user group and charities database - rds east … · web view2013/10/07 · the database can be...
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Last updated 10/07/2013
2015
Database Compiled RDS EM
Aug 2015
User groups and Charities across the East Midlands and wider
User Groups and Charities Across East Midlands and WiderAdvocacy Services – Northamptonshire County Council – 2005
‘Total Voice’ – Advocacy services across Northamptonshire
www.totalvoicenorthamptonshire.org Total Voice NorthamptonshireVoiceAbility Doddridge Centre109 St James RoadNorthamptonNN5 5LDTel: 02033 558846Email: [email protected]
Total Voice is an advocacy service providing independent advocacy for people aged over 18.
They support people who use adult mental health care services in Northamptonshire with issues about mental health and social care.
Akwaaba Ayeh www.akwaabaayeh.com 40 Chandos Street Highfields Leicester LE2 1BL0116 247 [email protected]
Formally the Mental Health Shop. Provides advocacy to people of African, African-Caribbean and Asian origin with mental health needs. Also provides advice, information and support. Home and hospital visits are available on request. Punjabi, Hindi and Patois spoken, interpreters for other languages can be arranged. Transport available for client support group meetings.Service for African, African Caribbean & Asian people.
Braunstone Alert Braunstone Neighbourhood Management BoardResidents NetworkNeighbourhood Support Team45 Wellinger WayBraunstoneLE3 [email protected] RETIRED MARCH 2013 – any replacement?
“Braunstone Alert” MagazineServices for Older ResidentsHealth & Social Care CentreCrime & GrimeBendbow SiteBraunstone Awards
British Charities http://www.britishcharities.com/ SITE UNDER CONSTRUCTION MARCH 201342 Graham RoadNewtown SouthamptonHantsSO14 0AWTel: +44 (0)23 80227949
British Charities portal provides directory of UK registered charities, charity shops, charity suppliers and charity news. The main aim is to assist people in giving to charity.
Carers Development Project, Mental Health, Health & Social Care Projects
www.communityactionpartnership.org.uk Carers Development, Mental Health, Health & Social Care ProjectsThe PavilionSportsfield LaneHuncote Leicestershire LE9 3BNTel 0116 272 7669Mental Health Services Manager Annette Boon Email: [email protected]
Community Action Partnershp's Mental Health Project offers a variety of social groups, befriending scheme, sporting activity and organic gardening, all aiming to enable recovery by providing the space and skills people need to cope with their difficulties, increase their confidence and self esteem and lead an independent life.
CLASP www.claspthecarerscentre.org.uk CLASP The Carers Centre is a registered charity which was set up
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CLASP The Carers CentreUnit 19, 4th FloorMatrix HouseConstitution HillLeicesterLE1 1PLTel: 0116 2510999Email: [email protected]
in 1994 to provide a wide range of support services for carers living in Leicester, Leicestershire and Rutland.
Communities in partnership (CiP)
www.communitiesinpartnership.org.uk
Beaumont Enterprise Centre, Boston Road,
Leicester LE4 1HB
Tel: 0116 234 1577 Fax: 0116 235 1844
email:
And Jen Lovegrove (Engagement Manager) [email protected]
Communities in Partnership aims to improve the lives of the people of Leicestershire, Rutland and Leicester City by encouraging individuals and organisations to work in partnership with each other, and with government, to build stronger, safer and better communities.
Desmond www.desmond-project.org.ukDesmond National OfficeWard 5/6Leicester General HospitalLeicester, LE5 4PWTel: 0116 [email protected]
Patient structured education and educator training in Type 2 diabetes
East Midlands Funders’ Forum
By post c/o:-Social Enterprise East MidlandsIan Fisher, Administration officerContact: Tel: (0115) 871 4760Fax: (0115) 871 4768Email: [email protected]
Suite 28 Minerva HouseSpaniel RowNottinghamNG1 6EP
Provides opportunities for funders to meet together to share ideas, discuss and learn about funding policy and disseminate information. Provides support and advice for those seeking funding and a range of training programmes and resources on securing funding. EMFF is hosted within the Funding Access Section of Regeneration East Midlands
EQUIP www.equip.nhs.uk Sarah Greening, Health Information Co-ordinator,Library Services Development Unit,NHS West Midlands Workforce DeanerySt. Chad's Court,213 Hagley Road,BirminghamB16 9RG
Telephone: 0121 695 [email protected]
Electronic Quality Information for Patients (National support groups & W.Mids)
The database lists 3500 groups. Each entry includes the support group's address, telephone number, helpline, email, website (if available), services and the date it was last checked. Updated annually. Search by location - you can choose from either searching the whole of the 'UK' for national support groups; the 'West Midlands' for groups covering the whole region; or choose an individual county or Primary Care Trust area
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for more local groups (West Midlands counties only).
Search by health topic - there is a drop down list of health topics to choose from. Search by topic AND location - For example, you could look for Hearing disorders contacts in Worcestershire.
FAIRDEAL Unit 15, 3rd Floor, Matrix House 7 Constitution Hill Leicester LE1 1PL0116 251 [email protected]
Works for and with people with disabilities, including learning difficulties and people with physical and sensory impairments and/or mental health difficulties. Offers a wide range of support to people involved in assessments, reviews and complaints proceedings. Provides an individual as well as group advocacy service.
Infolinx www.leicestershireconnect.org.uk/about_infolinx
Community Information Website, covering Leicestershire, Leicester and RutlandDatabase holding details of 5,000 clubs, societies, organisation and self help groups based in the region.
Kettering Voluntary Network www.kvn.org.ukUnit 3 The Business Exchange, Rockingham Rd, Kettering, NN16 8JXTel 01536 526422
Kettering Voluntary Network (KVN) supports voluntary and community groups throughout the Borough of Kettering by providing · A volunteer brokerage service · Advice and signposting for new and existing groups · Assistance for groups in finding funding sources and making grant applications · A quarterly newsletter · Regular networking opportunities for the Kettering Voluntary Forum · Representation for local groups on local and countywide partnerships. · Workshops on topics such as supporting volunteers, marketing your organisation and writing funding bids.
LAMP Leicestershire Action for Mental Health Project
www.lampdirect.org.uk 65 Regent Road Leicester LE1 6YF0116 255 [email protected]
Gateway to information on mental health throughout Leicester, Leicestershire and Rutland. Works primarily with people experiencing mental distress and with carers. Closely involved in consultation and development of local services. Its advocacy services empower people to make informed choices, to express their views, and to access rights and entitlements. Information services provide leaflets,
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signposting and advice to its target group, mental health professionals and the general public. Manages a mental health web site
Leicester Centre for Ethnic Health Research
Leicester Centre for Ethnic Health Research CoordinatorAsma/[email protected] 0116 295 414092 Regent RoadThird Floor, Enkalon House, LeicesterLE1 7PE
Launched in 2006 to aid the delivery of equitable health care in the UK through investigation of disease patterns in ethnic minority population Consumer PanelTo promote the LCEHRTo become involved in research projects either as individuals or as a panelTo facilitate access of researchers to ethnic minority communities and organisationsTo assist in the recruitment of participants to research studiesTo identify the areas of research that are important to the local ethnic minority communitiesTo assist in the dissemination of research findings in the local communities
Leicester City and Leicestershire County Carers Project
1st Floor Tornos House, Garden RoadWhitwick Business ParkCoalvilleLeicestershireLE67 45Q
01530 [email protected]
This project in Leicester City and Leicestershire County supports carers of those with serious mental illness. Primarily we offer information, one-to-one support and develop new groups for carers in the city. Advocacy and signposting to local services as well as national networks. CETP (Carers Education and Training Programme) courses have been provided. Carers also have access to information about Rethink events.
The Leicestershire Diabetes Focus Group
Lead: Michelle Izzard – Diabetes Research Network Support Manager, Tel: 0116 2587250,[email protected]
Reviews of study literature, some members attend national PPI training events and conferences, developed review sheets for grant applications
Leicester, Leicestershire & Rutland Focusline
Churchill House14 Heathcote StreetNottinghamNottinghamshireNG1 3AA
0800 027 2127 (Helpline)[email protected]
The Churchill House project includes a telephone helpline service known as Focusline, which offers confidential support, information and emotional support to the Leicester, Leicestershire and Rutland areas. This service is available to any adult who has a mental health problem, carers and professional agencies.
Leicester Link Jon DavisCommunity Engagement Worker
Network of local people, organisation and groups who want
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Freepost RRHL-BYCU-EGSU, Threadneedle House, 27 Copdale Road, LeicesterLE5 4FG0116 273 6506Email [email protected]
Laura MaranoCommunity Engagement Worker Leicester City LINk TeamBusiness Box, 3 Oswin Road, Leicester, LE3 1HRTel: 0116 279 5075Mobile: 07525 237 742Email: [email protected]
to strengthen the quality of local health and social care services.
Leicester LINk Participation Forum“Stronger Voice, Better Care” bookletMission StatementDistribution of Contact Details LINk Consent Form
Leicestershire Partnership Leicestershire Partnership NHS TrustGeorge Hine HouseGipsy LaneLeicesterLE5 0TDTel 0116 225 6000
Email [email protected]
http://www.leicspt.nhs.uk/_Forpatients-Supportgroupsandadvocacy.aspx
Leicestershire Partnership NHS Trust offers a wide range of services and support includingChild and adolescent mental health services, mental health services for adults and older people, learning disability services, specialist services, e.g. drug and alcohol services, eating disorder services, psychotherapy services, patient and liaison service (PALS), advocacy services and support groups.
Mental Health Research Network
http://www.ukmhrn.info/index/ppi/service-user-involvement.html
MHRN East Midlands Hub plus South Yorkshire Hub manager: Anne Priddeyemail: [email protected]: 0115 823 1302MHRN East Midlands Hub plus South YorkshireInstitute of Mental HealthSir Colin Campbell BuildingUniversity of Nottingham Innovation ParkTriumph RoadNottingham NG7 2TU
SURGE (Service User Research Group for England) supports mental health service users, clinicians and academics as they work together on mental health research.SURGE plays an important part in making sure research across the MHRN is valuable for and makes sense to service users. SURGE support service user input into the MHRN through service user involvement in local hub committees, research project teams and at a national level.
National association of LINks members (NALM)
http://www.networks.nhs.uk/network_finder
National Organisations Patient Supporthttp://www.patient.co.uk/selfhelp.asp
To learn more about LINks go to the
Details of 1910 UK patient support organisations, self help groups, health and disease information providers, etc. Each entry is cross referenced and details are checked annually. Browse by A-Z, by subject
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Department of Health website www.dh.gov.uk
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4137040
The ‘host’ agency for the LINk in Leicester:
Unit 55, The Business Box,2 Oswin Road,Braunstone,Leicester.LE3 1HR
James Hellard
LINks AdministratorTel: 0116 279 5075Email: [email protected]
For general enquiries: [email protected] Address: 1 Beech Avenue, Sherwood Rise, Nottingham, NG7 7LJ
category, or search using the search box above. (Regularly updated)A free directory that lists self help groups, support groups and charities in the UK. Patient and public involvementThe PPI Forums closed at the end of March 2008 and were replaced by Local Involvement Networks (LINks).
A stronger local voice: A framework for creating a stronger local voice in the development of health and social care services.
The LINk will be launched Sept/Oct 08 and should eventually have a website in the meanwhile contact via phone.
National Youth Agency National Youth Agency, Eastgate House, 19-23 Humberstone Road, Leicester, LE5 3GJTel 0116 242 7350Email [email protected] www.nya.org.uk
“Involving Children and Young People – An Introduction”
NHS Leicester City NHS Leicestershire County and Rutland
Deb Wall, Directorate of Public Health & Improvement, NHS Leicester City
Publication “Get Involved in Research” A Brief guide for patients, carers and the public who want to find out more about health based research and how to become involved in research projects
NHS National Institute for Health and Clinical Excellence
National Institute for Health and Clinical ExcellenceMidCity Place71 High HolbornLondonWC1V 6NAwww.nice.org.uk
“A Guide for Patients and Carers” Contributing to a NICE clinical guideline”
How Patient and Carer organisations can contribute – the stakeholder process
How individual patients and carers can contribute
What happens when NICE guidelines are published?
NHS National Institute for Health ResearchNIHR Local Research Networks within East Midlands SHA
South East Midlands DRN (Part of the NIHR Diabetes Research Network)Network Leads Professor Melanie Davies and Professor Kamlesh KhuntiNetwork Manager: Susan EnrightHost Organisation University Hospitals of Leicester NHS Trust Tel 0116 204 7818Address Department of Diabetes Research,
The NIHR Clinical Research Network (NIHR CRN) is managed by the NIHR Clinical Research Network Coordinating Centre (NIHR CRN CC) and is one of the four Networks in the UK that comprise the UK Clinical Research Network. The Networks support and deliver high quality clinical research
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Victoria Building, Level 0 University Hospitals of Leicester, Leicester Royal Infirmary, Leicester, LE1 5WWEmail [email protected] www.ukdrn.org.lrn_semidlands.html
studies.www.crncc.nihr.ac.uk
NIHR CLAHRCLeicestershire, Northamptonshire and Rutland
Partner Organisation in CLAHRCUniversity Hospitals of Leicester et al
http://clahrc-lnr.nihr.ac.uk
Collaboration for Leadership in Applied Health Research & Care
“Working Together to conduct high quality research to improve the health of the population of Leicestershire, Northamptonshire and Rutland”
Northampton Charities and Voluntary Organisations
Northampton Volunteering Centre15 St. Giles StNorthamptonNN1 1JA
Tel: 01604 637522http://www.northampton-volunteers.org.uk/aboutus/index.aspx?id=36
Northampton Volunteering Centre is an independent, registered charitable company, established in 1990. Aims to provide highly effective infrastructure support and services for voluntary sector organisations in Northampton and surrounds.
Northamptonshire County Council Children’s and Young People’s Service
Northamptonshire County Council, Children and Young People’s Service, Early Years and Childcare TeamPO Box 216, John Dryden House, 8-10 The Lakes, Northampton, NN4 7DD. email: [email protected] Tel: 01604 237935http://www.northamptonshire.childrensservicedirectory.org.uk/default.aspx
This on-line directory provides information on a range of services and activities for children and young people aged 0-20 years across Northamptonshire.
NYA Hear by RightStandards for the active involvement of children and young people
Eastgate House, 19-23 Humberstone Road, Leicester, LE5 3GJ Tel 0116 242 7350Hear by Right booklet and CD Romwww.nya.org.uk/hearbyrightor email [email protected]
Booklet “Hear by Right” Children and young people’s involvement is a visible commitment that is properly resourcedChildren and young people’s involvement is valueChildren and young people have equal opportunity to get involvedPolicies and standards for the participation of children and young people are in place, evaluated and improved.
Patient Advice and Liaison Service (PALS)
www.leics.gov.uk/new_servicepagestheme.htm?initial=&pid=Other003&theme=T7 [email protected]. Patient Advice & Liaison Service Leicestershire Partnership Nhs Trust Ground Floor Bradgate Mental Health Unit
Free and confidential service that helps patients. PALS can help answer questions about hospital experiences and offer advice and support for family carers and friends.
Patient ConcernPatient Concern, PO Box 23732, London SW5 9FY.
Patient Concern is an organisation committed to promoting choice and empowerment for all health service users. The core principle is complete consumer independence.
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Email [email protected]
http://www.patientconcern.org.uk/
To make sure that there are no conflicts of interest, Patient Concern has special advisers by invitation and supporters who contribute their time, expertise and experience free of charge. This facilitates a totally patient-oriented approach.
Operates as a network. Contributors include patients, their advocates, carers, lawyers, patient representatives, journalists, ethicists and human rights activists.
Patient Information Forum (PIF)
Local PiF representative:Greta Smalley Communications Manager - Websites University Hospitals of Leicester NHS TrustCommunications OfficeGwendolen HouseGwendolen RoadLeicester LE5 4QFTel: 0116 258 8722Email: [email protected] http://www.pifonline.org.uk/?o=1158
To act as an independent forum for the sharing of good practice amongst those involved in the development, production and dissemination of high-quality consumer health information.
The East Midlands PiF region covers the NHS East Midlands area.
The People’s Forum The People’s Forum, Open Assembly@Genesis and De Montfort University
Unit 26, Vulcan House Vulcan Road Leicester LE5 3EF0116 262 [email protected]
Service User experience of Mental Health Provision in Leicester and Leicestershire and RutlandResearch Project designed, delivered and evaluated by Service Users and Carers Dec 2008An independent service user organisation representing Leicestershire County and Rutland, ensuring that the service users' voice is heard. Aims to effect real change in mental health service provision for the benefit of the service user through involvement with the NHS Trust and NIMHE East Midlands. Members sit on numerous statutory service committees involved in planning, service redesign and evaluation. Works towards positive promotion of mental health issues. Self referral
People in Research Philippa YeelesUK Clinical Research Collaboration20 Park CrescentLondonW1B 1AL
T: 020 7670 5153F: 020 7637 6067Email: [email protected]
Aimed at members of the public, People in Research is a UK Clinical Research Collaboration project that has been led by one of its Partner organisations, INVOLVE. The site includes links to the latest research involvement opportunities for the public and a facility for researchers to advertise their research for
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http://www.peopleinresearch.org/
INVOLVEWessex HouseUpper Market StreetEastleighHampshireSO50 9FDTelephone: 02380 651088Textphone: 02380 626239 Fax: 02380 652 885Email [email protected]
potential involvement by the public.
Self Help UK http://www.self-help.org.uk/ Self Help UK is a free service provided by Intuition Communication Ltd, specialists in health care publishing on the Internet. Consists of a searchable database of over 1,000 self help organisations, patient support groups and charities across the UK that provide support, guidance and advice to patients, carers and their relatives, covering medical conditions, diseases and treatments.
The database can be searched by category or key word, or viewed in a directory format, in which the groups and organisations are grouped by type e.g. Addiction, Aids and HIV, Allergy and so on.
SURF www.hcaisurf.orgEngland's Healthcare-Associated Infection (HCAI) Service Users Research Forum (SURF)Andrea Whitfield (on maternity leave Feb 2013, contact Jessica Brown on [email protected] )SURF CoordinatorHCAI Research NetworkThames Valley UniversityParagon HouseBoston Manor RoadBrentford, Middlesex, TW8 9GATel: 020 8209 4361Mobile: 07779 124 715e-mail: [email protected] (see above for contact)website: www.hcaisurf.org
The UK Advocacy Network (UKAN)
Volserve House14 - 18 West Bar Green, Sheffield, S1 2DA. Email: [email protected]
UKAN, the user controlled national federation of advocacy projects, patients' councils, user forums and self-help and support groups working in the field of mental health.
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http://www.u-kan.co.uk/
For the Midlands:Aylesbury Vale AdvocatesPembroke Court28 Cambridge StreetAylesburyBucks HP20 1RS
T/F: 01296 432313
Midlands; Provides advocacy support to adults (18 - 65) who have communication difficulties, most commonly either mental health problems or a learning disability. Funded to help those living in the community in the Aylesbury Vale area. Employs four part-time advocacy coordinators and a team of about 40 volunteers. Has experience of running User-Focused monitoring projects and has recently been given a contract to run the IMCA service in local area in conjunction with Age Concern.
University of Northampton Service User and Carer Involvement Group
Chair Linda Lilley Senior Lecturer School of health University of Northampton Tel 01604 892868 [email protected]
Curriculum development in modules run by the School of Health, reviewing research proposals and getting involved in research design
Voluntary Action Leicester 9 Newarke StreetLeicester LE1 5SNTel 0116 257 5038www.voluntaryactionleicester.org.ukHelpline: 0116 257 5050Email: [email protected]
Voluntary Action Blabywww.voluntaryactionblabydistrict.org.uk
300 members drawn from Leicester’s voluntary sectorWork with volunteers
Voluntary Action Rutland The Rutland Volunteer Centre Barley Thorpe Rd, Oakham, Leicestershire, LE15 6QHTel: 01572 722622
http://www.varutland.org.uk/
Voluntary Action Rutland (VAR) is a one stop shop for volunteers and organisations based at the Rutland Volunteer Centre in Oakham. VAR combines the services of a CVS (Council for Voluntary Service) and a Volunteer Bureau (VB). VAR supports and promotes local voluntary action by providing advice, information and training. Offers a wide range of services, however main focus is services to vulnerable people.
Self help groups (from www.ukselfhelp.info )Abduction;‘Reunite’
www.reunite.org/ International Child Abduction CentrePO Box 7124, Leicester, LE1 7XXAdvice Line: 0116 2556 234. Tel: 0116 2555 345Email: [email protected].
The leading UK charity specialising in international parental child abduction.Reunite undertakes research into issues of concern to those who use reunite´s services and also areas of research which will make a useful contribution to the debate surrounding the manner in which abduction matters are dealt with.
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Abuse Abuse Survivorswww.abuse-survivors.org.uk/users-work
22 Revenue ChambersSt Peters StreetHuddersfieldHD1 1DL
Telephone: Helpline and General Enquiries: 0844 357 4567
Email:[email protected]
Online support for survivors of abuse. Lists statistical incidence of different types of abuse. Also have work/interest in Depression, BPD, OCD, Eating Disorders, Schizophrenia, Self Harm, Dissociation.
www.elderabuse.org.uk
Action on Elder AbusePO Box 60001StreathamSW16 9BY
020 8835 9280 020 8696 [email protected]
Information and online resources.
www.napac.org.uk NAPAC The National Association forPeople Abused in Childhood
Providing support and information for people abused in childhood.
www.voiceuk.org.uk
Voice Uk
Rooms 100-106 Kelvin HouseRTC Business CentreLondon RdDerbyDE24 8UPTel: 01332 291042 01332 291042 Fax: 01332 207567Email: [email protected]
A national charity supporting
people with learning disabilities
and other vulnerable people who
have experienced crime or abuse.
We also support their families,
carers and professional workers.
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Acoustic NeuromaBANA British Acoustic Neuroma Associationwww.bana-uk.com
The British Acoustic Neuroma AssociationOak House B, Ransom Wood Business ParkSouthwell Road WestMansfieldNottinghamshireNG21 0HJ
tel: 01623 632143fax: 01623 635313 e-mail: [email protected]
There is an East Midlands support group, details of which are available if you become a member.
In addition to the public areas of the website, there is also a Members-only section accessible right now by all BANA members through the Member's Login. The Members' section will give you access to:
Members' Forum
BANA’s Treatment Centre Survey
Articles about treatment issues
Past articles from Headline News, our in-house magazine
Regional contact details
AMNET www.amnet-charity.org.uk
Chairman - Alison Frank 01953 860692
The support group for Acoustic Neuroma or Meningioma patients at Addenbrookes Hospital Cambridge. The Acoustic and Meningioma Network AMNET is a network of former patients, present patients, the clinical staff at Addenbrookes and other interested parties.
Addison's Disease Self Help Group
www.addisons.org.ukDeana Kenward (Editor)ADSHGPO Box 1083GUILDFORDGU1 9HXUnited Kingdom
Online contact form only
Additives Survivors' Network www.additivesout.org.uk
Geoff Brewer
[email protected] National Co-ordinatorAdditives Survivors' Network (UK) 63 Downlands Road DEVIZES SN10 5EF
UK Adhesions Society UKAS http://ukadhesion.workwithus.org/Arden HouseGourdiehillThe GrangeErrol
Objectives are to provide information on Adhesions and Adhesion related disorders (ARD) its treatment and prevention, for members and to offer support for
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PerthPH2 7TBScotland
Tel: 07799526705Kath [email protected]
those suffering from this debilitating disorder.
ALD Life Adrenoleukodystrophy/Adrenomyeloneuropathy
www.aldlife.org PO BOX 43642
LONDON
SE22 0XR
020 8473 7493
CORPAL
Agenesis of the Corpus Callosum
www.corpal.org.uk/default.asp
Telephone: 0208 949 6598
E-mail: [email protected]
Post: CORPAL, 5 Gordon Way, Orton Longueville, Peterborough, Cambs, PE2 7AE
Al-AnonAl-Anon Family Groups UK & Eire61 Great Dover Street, London SE1 4YF
Confidential Helpline 020 7403 0888
(Helpline available 10 am - 10 pm, 365 days a year)
Fax: 020 7378 9910Email: [email protected]
Alzheimer's Society www.alzheimers.org.uk
(Leicester Office) The Lodge46 Humberstone GateLeicesterLE1 3PJ
Tel: 0116 251 0366
Email: [email protected]
Provides information, advice and support to carers of people with dementia, including home visits, carers support groups, advice, advocacy and telephone helpline. Please telephone for details of Carers Support Groups.
Breast Cancer Voices www.breastcancercare.org.uk
If you would like to talk to someone about becoming involved with Breast Cancer Voices please contact Amarjit Kaur, at
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[email protected] or call on 0845 092 0800.
Ankylosing SpondylitisNational Ankylosing Spondylitis Society (NASS).www.nass.co.uk
As well as support they offer focus groups and use volunteers to help people with AS and help to raise awareness at local and national level.
AnorchidismAnorchidism support groupwww.asg4u.org Also know as;Testicular regression syndromeVanishing testes syndromeAnorchiaAnorchic
Provide a means of networking with affected families of boys with congenital or acquired absence of testes as well as education and information.
ASSERT Angelman Syndrome Support Education and Research Unitwww.angelmanuk.org
A chromosome disorder that causes severe learning difficulties. Since the condition was first identified in 1965 to date only about 350 people (mostly children and young adults) have been diagnosed in the UK. This number is increasing due to the improvement and ease of Genetic testing.ASSERT Trustee's are all relatives of children with Angelman Syndrome. They provide information for doctors to give to families of those diagnosed with this and fund research into the condition.
Anticoagulation AntiCoagulation (ACE)www.anticoagulationeurope.org
Supports patients, their families, carers and health care professionals on all aspects of anticoagulation therapy.
Aphasia Speakabilitywww.speakability.org.uk
Speakability is the national charity dedicated to supporting and empowering people with Aphasia and their carers.
Speakability is also developing a network of Aphasia Self-Help Groups
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Aplastic AnaemiaAplastic Anaemia Trustwww.theaat.org.uk Fighting bone marrow failure.
Support sufferers of aplastic anaemia and allied disorders. The Support Group offers support and information to patients and their families; to anyone coping with aplastic anaemia.
Has a network of Group Members.
ArrhythmiaArrhythmia Alliance (A-A)www.heartrhythmcharity.org.uk
Arrhythmia Alliance (A-A) is a coalition of charities, patient groups, patients, carers, medical groups and allied professionals. These groups remain independent, however, work together under the A-A umbrella to promote timely and effective diagnosis and treatment of arrhythmias.
Arteriovenous MalformationAVM Support UKwww.avmsupport.org.uk Aunique group working throughout
the UK offering free, patient friendly information and support to all whose lives have been affected by the rare condition Arteriovenous Malformation (a tangle of abnormal blood vessels).
Arthritiswww.arthritisresearchuk.orgwww.arthriticassociation.org.ukwww.arthritiscare.org.ukwww.barc.org.uk (Birmingham Arthritis Resource Centre)www.ccaa.org.uk (The Children’s Chronic Arthritis Association)
ArthrogryposisThe Arthrogryposis Groupwww.tagonline.org.uk
Offer telephone support on a regional cluster basis where all the volunteers of our Contact Network have a wide experience of arthrogryposis. Also arrange area get-togethers and social events where people can meet each other and exchange experiences.
There is an ‘information share’ area on the website with postings from people diagnosed with this condition.
AsthmaAsthma Uk www.asthma.org.uk Has an advice line and lots of
information and links on the website.
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AtaxiaAtaxia UKwww.ataxia.org.uk Ataxia UK works in two main ways:
funding research into finding treatments and a cure for ataxia, and supporting people through a range of services.
Attention Deficit Hyperactivity Disorder (ADHD)
The Hyperactive Children's Support Group (HACSG)www.hacsg.org.uk
A registered charity which has been successfully helping ADHD/Hyperactive children and their families for over 30 years. The HACSG is Britain's leading proponent of a dietary approach to the problem of hyperactivity.
AutismAutism Independent UK www.autismuk.com Autistic Society www.autisticsociety.org The National Autistic Societywww.autism.org.uk Parents for the Early intervention of Autism (Peach) www.peach.org.uk
Back Painwww.backcare.org.uk
Features information and also newsflashes regarding researchers needing input from sufferers as participants.
Barth Syndromewww.barthsyndrome.org.uk
Information for affected families and medical professionals and aiming to help to achieve a fast and accurate diagnosis, followed by the best care and support.
Beckwith-Wiedemann Syndrome (BWS)
Beckwith-Wiedemann Syndrome Support Groupwww.bws-support.org.uk
A forum for sufferers to share problems and information and to act as a self-help group. It aims to promote both public and professional awareness of BWS and to support and encourage research.
Bed-wettingEducation and Resources for Improving Childhood Continence (ERIC)www.eric.org.uk
This website provides information and support on childhood bedwetting, daytime wetting, constipation and soiling to children, young people, parents and professionals.
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BereavementThe Child Bereavement Trust www.childbereavement.org.uk The Compassionate friends www.tcf.org.uk The Laura Centre (Leicester)www.thelauracentre.org.uk Cruse Bereavement Carewww.crusebereavementcare.org.uk PAPYRUS Prevention of Young Suicidewww.papyrus-uk.org Survivors of Bereavement by Suicidewww.uk-sobs.org.uk Winston’s Wish The Charity for Bereaved Children www.winstonswish.org.uk
Birth DefectsNewlife Foundation for Disabled Childrenwww.newlifecharity.co.uk Support, links to medical research
and information.
BladderBaldder Extrophy Family Association www.bladderexstrophy.co.uk A support network for families of
children born with bladder/cloacal
exstrophy and/or epispadias. The
Association is based in the UK with
strong links worldwide.
Bladder and BowelThe Bladder and Bowel Foundation http://www.bladderandbowelfoundation.org/
A UK wide charity that provides
information and advice on a range
of symptoms and conditions related
to the bladder and bowel.
BlindnessAction for Blind People www.actionforblindpeople.org.uk Guide Dogs for the Blindwww.guidedogs.org.uk National Federation of Families with Visually Impaired Childrenwww.look-uk.org National Blind Children’s Societywww.nbcs.org.uk Royal National Institute of Blind People www.rnib.org.uk
Borderline Personality Disorder
BPD World www.bpdworld.org Includes support, information and a
community chat forum.
Bowel Defects and Abnormalities
Gastrochisis Exomphalos Extrophies Parents Support (GEEPS) www.geeps.co.uk
An international network of families
and friends of children born with
abdominal abnormalities.
18
Brain InjuryBrain Injury Rehabilitation Trust (BIRT) www.birt.co.uk British institute for Brain Injured Children (BIBIC) www.bibic.org.uk Foundation for the Brain Injured Infant www.cerebra.org.uk Child Brain Injury trust www.cbituk.org
Brain TumourBrain and Spine Foundation www.brainandspine.org.ukBrain Tumour Uk www.braintumouruk.org.uk
Brittle BoneBrittle Bone Society www.brittlebone.org Through the Society, families can
get in touch with each other and share issues on how to cope. The Society organises local meetings and an annual conference, which enables families to meet and exchange ideas.
The Society can also give help and advice on benefits, mobility, education, equipment, medical issues including genetics, and other associated issues.
Cancerwww.beatingbowelcancer.org www.bowelcanceruk.org.ukwww.breastcancercare.org.ukwww.clicsargent.org.ukwww.macmillan.org.uk www.cancercounselling.org.ukwww.cancerlt.orgwww.cancerkin.org.ukwww.chect.org.ukwww.christianlewistrust.co.ukwww.kcuk.orgwww.mariecurie.org.ukwww.mouthcancerfoundation.orgwww.breastcancergenetics.co.ukwww.nsoc.co.ukwww.opa.org.ukwww.ovacome.org.ukwww.pennybrohncancercare.orgwww.prostate-cancer.org.ukwww.rarercancers.org.ukwww.thyroidcancersupportuk.org
CandidaNational Candida Societywww.candida-society.org.uk Association for Children’s Palliative Carewww.act.org.uk Crossroads Care www.crossroads.org.ukCarers UK www.carersuk.orgThe Princess Royal Trust for Carers www.carers.org
Aims to provide information and support to people with candida overgrowth and raise awareness of candida - its causes, treatments and related conditions.
19
CarersAble Community Care www.uk-care.com
Cerebral PalsyLiving with Cerebral Palsy www.livingwithcerebralpalsy.com www.scope.org.uk
CJDwww.cjdsupport.net A patient support group providing
help and support for people with all strains of Creutzfeldt-Jakob disease, their carers and concerned professionals.
Cleft Lipwww.clapa.com Provide information including how to
access treatment, activities and specialized bottles and teats for babies.
Cluster HeadachesOrganisation for the Understanding of Cluster Headaches (OUCH) www.ouchuk.org
Exists to raise general awareness of the condition within the medical profession and the general public. We offer support and guidance to sufferers and their families and work closely with the Institute of Neurology in London where our Patron, Professor Peter Goadsby, runs the Headache Group. Also conduct research.
Coeliac (Dermatitis Herpetiformis)
www.coeliac.org.uk www.dermatitisherpetiformis.org.uk
Congenital Adrenal Hyperplasia
www.livingwithcah.com Aims to give support to families and sufferers, increase awareness of the condition to the public and to the medical profession and raise funds to support research.
Crohn’s DiseaseCrohn’s in Childhood Research Association www.cicra.org National Association for Colitis and Crohn’s Disease www.nacc.org.uk
Cushing’s Disease/ Cushing Syndrome
www.cushingsacth.co.uk Patient led and run website with information and forum.
Cyclical Vomiting Syndromewww.cvsa.org.uk A registered charity providing
information and supporting sufferers and their families or those affected by Cyclical Vomiting Syndrome.
Cystic FibrosisCystic Fibrosis Trust www.cftrust.org.uk Information, support and research
and an online forum.
Dancing EyesThe Dancing Eye Syndrome Trust www.dancingeyes.org.uk
The Dancing Eye Syndrome Trust provides support and information to families of children with Dancing Eye Syndrome.
20
DeafnessThe British Deaf Association www.bda.org.uk Deaf Education Through Listening and Talking (DELTA) www.deafeducation.org.uk www.hearingconcernlink.org National Association of Deafened People www.nadp.org.uk National Deaf Children’s Society www.ndcs.org.ukRoyal Association for Deaf People www.royaldeaf.org.uk Royal National Institute for Deaf People www.rnid.org.uk The Elizabeth Foundation for Deaf Childrenwww.elizabeth-foundation.org
Deaf/Blindwww.deafblind.org.uk www.sense.org.uk
DementiaThe Alzheimers Society www.alzheimers.org.uk Lewy-Net Dementia with Lewy Bodies www.nottingham.ac.uk/pathology/lewy/lewyhome.html Pick’s Disease Support Group www.pdsg.org.uk
Dental AnxietyBeyond Fear Dental phobia Support www.beyondfear.org Dental Fear Central www.dentalfearcentral.org
DepressionDepression Alliance www.depressionalliance.orgDepression UK www.depressionuk.org MDF the Bipolar organisation www.mdf.org.uk
Dermatomyositis/Polymyositis/Inclusion Body Myositis
Myositis Support Group www.myositis.org.uk
Provides advice and support to individuals and their families affected by Dermatomyositis, Polymyositis, Inclusion Body Myositis and Juvenile Dermatomyositis. Also raise funds and promote medical research to improve the diagnosis, treatment, management and understanding of these rare illnesses.
Devic's DiseaseDevics and NMO Worldwide Support www.devic.org.uk
Has information about the condition, chat forums, a page where you can advertise for a penpal, a special area for families affected by Devic's and NMO, and links to other sites that could be of interest.
DiabetesDiabetes UK www.diabetes.org.uk
Diabetes UK is the largest organisation in the UK working for people with diabetes, funding research, campaigning and helping people live with the condition.
21
DisabilityAbleize Disability Directory www.ableize.com Assist Uk www.assist-uk.org Association of Disabled Professionals www.adp.org.uk Association of Wheelchair Children www.go-kids-go.org.uk Queen Elizabeth’s Foundation for Disabled People www.qefd.org BLESMA British Limbless Ex-Service Men's Association www.blesma.org British Computer Society Disability Group www.disability.bcs.org.ukCALVERT Trust www.calvert-trust.org.ukDisability Alliance www.disabilityalliance.org Disability, Pregnancy & Parenthood International www.dppi.org.ukDisabled parent’s Network www.disabledparentsnetwork.org.uk Limbless Association www.limbless-association.org RADAR (Royal Association for Disability And Rehabilitation) www.radar.org.uk
Disfigurementwww.birthmarksupportgroup.org.uk www.changingfaces.org.ukFacial disfigurement and cancer www.lets-face-it.org.uk
Down’s SyndromeDown’s Heart Group www.dhg.org.uk Down’s Syndrome Association www.downs-syndrome.org.uk
The Down's Syndrome Association provide information, counselling and support for people with Down’s syndrome, their families and carers, as well as being a resource for interested professionals.
DrugsFamilies, Drugs and Alcohol (Adfam) www.adfam.org.ukCocaine Anonymous www.cauk.org.uk Families Anonymous www.famanon.org.uk Narcotics Anonymous (UKNA) www.ukna.orgOver the counter Drug Information Agency www.over-count.weebly.com www.seroxatusergroup.org.uk
22
Dysautonomia Dysautonomia Society www.dsgb.org Aim to alleviate the suffering from
Familial Dysautonomia in any way,
raise public awareness of the
disease and raise funds for
research.
Dyschondrosteosis Dyschondrosteosis Support Group www.divdev.fsnet.co.uk A self-help group or support group
for people with dyschondrosteosis
( DCS ) and/or Madelung Wrist
Deformity (MWD ).
DyspraxiaDyspraxia Foundation www.dyspraxiafoundation.org.uk The Foundation seeks every
opportunity to increase
understanding of Dyspraxia,
particularly among professionals in
health and education and
encourages its local groups to do
the same. It continues to encourage
its smaller local groups to thrive and
develop their own ideas and to
distribute information and fund raise
for themselves.
DystoniaDystonia Societywww.dystonia.org.uk A UK-wide charity providing
support, advice and information for
anyone affected by the neurological
movement disorder known as
dystonia.
Eating DisordersBeating Eating Disorders (Beat) www.b-eat.co.uk Overeaters Anonymous www.oagb.org.uk
23
Ectodermal Dysplasia Ectodermal Dysplasia Society www.ectodermaldysplasia.org
The Ectodermal Dysplasia Society108 Charlton Lane Cheltenham Glos GL53 9EAEngland
Tel: +44 (0) 1242 261332Fax: +44 (0) 1242 261332 but please call before sending a faxEmail: [email protected]
A charity dedicated to improving the
health and wellbeing of people
whose lives are affected by
Ectodermal Dysplasia (ED). They
work together with people who have
ED, their families, researchers,
health and other professionals to
develop and share expertise,
increase awareness and
understanding, and assist with the
day-to-day management of ED.
Ectopic PregnancyThe Ectopic Pregnancy Trust www.ectopic.org.uk The charity for early pregnancy
complications – providing information, education and support to those affected and to the health professionals who care for them.
Includes online forums that also list
researchers requesting participants.Skin Disorders The National Eczema Society
www.eczema.org Skincell International Forum for Skin Disorderswww.skincell.org
Ehlers-Danlos SyndromeThe Ehlers-Danlos Support Group www.ehlers-danlos.org
P.O. Box 337 Aldershot, Surrey GU12 6WZ
Tel: 01252 690940
The website aims to share medical information about EDS, to make people aware of various support groups and events available, to give people the latest research on EDS, some advice on how to cope with living with EDS, show available publications, and to allow people to discuss personal issues on EDS with other people in our interactive Message Board.
Elderly Care Age UK www.ageuk.org.uk The Cinnamon Trust www.cinnamon.org.uk Counsel and Care for Older People and their Families and Carers www.counselandcare.org.uk
24
Electromagnetic SensitivityElecrosensitivity UK www.es-uk.info
A charity that aims to provide information to help those who have become sensitive to mobile and cordless phones, their masts, wifi, and a multitude of common everyday electrical appliances. Includes latest research and links.
Ellis-Van Creveld SyndromeParent’s website http://ellisvancreveld.co.uk/evc/index.htm online support group http://health.groups.yahoo.com/group/EvCFamilies/
A website to inform parents about
Ellis-van Creveld syndrome and too
facilitate parent-parent networking
and to collect and share current
medical information about EvC and
its treatment.
Encephalitis The Encephalitis Society www.encephalitis.info Provides a support service and
information resources for sufferers and their families. They also conduct and support research into causes and treatments.
EndometriosisEndometriosis SHE Trust (UK) www.shetrust.org.uk/index.php Endometriosis UKwww.endometriosis-uk.org
Online support groups and information.
Enuresis Education and Resources for Improving Childhood Continence (ERIC) www.eric.org.uk 36 Old School House, Britannia RoadKingswood, Bristol BS15 8DB0117 960 [email protected]
A website dedicated to supporting children and young people, their families and health professionals. They provide information, confidential support, services and resources.
Epidermyolysis Bullosawww.debra.org.uk
DebRA House, 13 Wellington Business Park, Dukes Ride, Crowthorne, Berkshire. RG45 6LS.
Telephone: 01344 771961 Fax: 01344 762661 Email: [email protected]
Provides information and practical support.
Epilepsy The David Lewis Centre www.davidlewis.org.uk Epilepsy Action www.epilepsy.org.uk Sudden Unexpected Death in Epilepsy (SUDEP) www.sudep.org For a Better Life with Eplilepy (FABLE) www.fable.org.uk The National Centre for Young
25
People with Epilepsy www.ncype.org.uk The National Society for Epilepsy www.epilepsysociety.org.uk
Erb’s palsy Erb’s Palsy Group www.erbspalsygroup.co.uk Erb’s Palsy Group60 Anchorway Road,Coventry,CV3 6JJ
Tel:024 7641 3293
Offers support, information and networking.
Essential Tremor The National Tremor Foundation www.tremor.org.uk The National Tremor FoundationDisablement Services CentreHarold Wood HospitalGubbins LaneHarold WoodRomford RM3 0AREssex, [email protected] 01708 386399
An organisation that aims to provide help, support and advice to all those living with all forms of tremor.
False Memory British False Memory Society www.bfms.org.uk Bradford on Avon WiltshireBA15 1NF01225 868682
Information, articles and discussion forum.
26
Familial Haemorrhagic Telangiectasia
Telangiectasia Self Help Group www.telangiectasia.co.uk
Mrs Diana Lawson Co-ordinator/Organiser Telangiectasia Self Help Group 39 Sunny Croft Downley High Wycombe Bucks HP13 5UQ ENGLAND
Tel : (+44) 01494 528047
A website that maintains a register of sufferers and puts affected families in touch with one another.
Familial Spastic ParaplegiaThe Hereditary Spastic Paraplegia Support Group www.hspgroup.org Dave Harris (Group Secretary)18 Lodmoor Avenue Weymouth Dorset DT3 5AF
01305 772286
The Group aims to encourage and support members and to assist research.
Feminising Testes SyndromeAndrogen Insensitivity Syndrome Support Group (AISSG) www.aissg.org
An International group that aims to support affected adults/families all over the world, as well as contributing to a better understanding of the various conditions, and of how they should be treated by the medical community.
Fetal Anti-Convulsant syndrome
Organisations for Anti Convulsant Syndromes www.oacs-uk.co.uk Terri Mckay (Parent Liaison Officer)P.O Box 772Pilling,Preston PR3 6WW
Tel: 0151 356 5949Email: [email protected]
A service provided to help and advise the parents / carers and anyone else involved with these children professional or non professional.
Fibroids Fibroid Network Online Support Group www.fibroidnetworkonline.com Information and online discussion
groups.Fibromyalgia Fibromyalgia Association UK
www.fmauk.org Fibromyalgia Association UKP O Box 206, Stourbridge, DY9 8YLFax: 0844 887 9033 Email: charity fmauk.org
Online forum.
27
Foetal Alcohol Syndrome Foetal Alcohol Syndrome Aware UK www.fasaware.co.uk Foetal Alcohol Syndrome Trust www.fasdtrust.co.uk National Organistaion on Foetal Alcohol Syndrome UK www.nofas-uk.org
Fragile X The Fragile X Society www.fragilex.org.uk Rood End House6 Stortford RoadGreat DunmowEssex CM6 1DA
01371 875100
Provides support, information and education and encourages research.
Galactosaemia Galactosaemia Support Group www.galactosaemia.org
GSG, 31 Cotysmore Road, Sutton Coldfield, West Midlands, B75 6BJ
Tel: 0121 3785143
Email: [email protected]
Offers support and networking.
Reflux Living with Reflux www.livingwithreflux.org
PO Box 10669HarlowCM20 9HE
Provides support and online forum.
Gaucher’s Disease Gaucher’s Association www.gaucher.org.uk
3 Bull PitchDursleyGloucestershire GL11 4NGUnited KingdomPhone/Fax: +44 1453 549 231
Promotes awareness and research as well as providing information.
Group B Strep Group B Strep Support www.gbss.org.uk Email: [email protected] Offers information and support and
generates continued support for research.
Genetic Disorders Genetic Alliance UK www.geneticalliance.org.uk Genetic Alliance UKUnit 4D, Leroy House, 436 Essex Road London N1 3QP – UK
Email: [email protected]
0207 704 3141
The national alliance of patient organisations with a membership of over 130 charities supporting all those affected by genetic disorders. Offers support and information.
28
Glaucoma International Glaucoma Association www.glaucoma-association.com
Woodcote House15 Highpoiunt Business VillageHenwoodAshfordKentTN24 [email protected] 01233 64 81 64
A patient-based organisation which works to prevent glaucoma blindness by providing information, literature and advice.
Glycogen Storage DiseaseThe Association for Glycogen Storage Disease (UK) www.agsd.org.uk 9 Lindop Road, Hale, Altrincham, Cheshire, WA15 9DZ.Tel: 0161 9807303
Provides support and information.
Goldenhar SyndromeGoldenhar Family Support Group www.goldenhar.org.uk Group Secretary [email protected]
A user run site offering information and support.
Gorlin Syndrome The Gorlin Syndrome Group www.gorlingroup.org
01772 496849
Offer guidance, advice and information to those affected by Gorlin Syndrome and aim to advance the education of the medical profession into Gorlin Syndrome and its implications for the family and to promote research into the causes, effects, treatment and management of Gorlin Syndrome.
Gout The UK Gout Society www.ukgoutsociety.org UK Gout Society Secretariat PO Box 527 London WC1V 7YP07778 304233Email: [email protected]
An information resource.
Growth The Child Growth Foundation www.childgrowthfoundation.org
The Restricted Growth Alliance www.rgaonline.org.uk
29
Guillain-Barré SyndromeGuillain-Barré Syndrome Support Group www.gbs.org.uk Ground floorWoodholme HouseHeckington Business parkStatipon RoadHeckingtonSleafordNG34 9JH
Tel: 01529 469910
E-mail: [email protected]
Offers support and information.
Haemochromatosis The Haemochromatosis Society www.haemochromatosis.org.ukHollybush HouseHadley Green RoadBarnetHertsEN5 [email protected]: 02084491363
Support, information and research.
Haemophilia The Haemophilia Society www.haemophilia.org.uk
The Haemophilia Society, 1st Floor, Petersham House 57a Hatton Garden, LONDON, EC1N 8JGTel: 020 7831 1020 Fax: 020 7405 4824Email: [email protected]
Provide information and support for all people affected by bleeding disorder and represent their interests.
Hair Loss Alopecia UK www.alopeciaonline.org.uk Hairloss Replacement Advisory www.hairlossuk.info
Head Injuries Child Brain Injury Trust www.cbituk.org Brain and Spinal Injury Centre www.basiccharity.org.uk Headway Brain Injury Association www.headway.org.uk
Hearing Voices Hearing Voices Network www.hearing-voices.org C/O Sheffield Hearing Voices NetworkLimbrick Day ServiceLimbrick RoadSheffieldS6 2PEEmail: [email protected]
Aims to raise awareness, provide support and networking and develop self-help groups.
Heart Arrhythmia Alliance www.arrhythmiaalliance.org.uk British Cardiac Patients Association www.bcpa.co.uk British Heart Foundation www.bhf.org.uk Cardiomyopathy Association www.cardiomyopathy.org Children's Heart Association
30
www.heartchild.info/cha/index.php Children's Heart Federation www.chfed.org.uk CRY (Cardiac Risk in the Young) www.c-r-y.org.uk HEART UK www.heartuk.org.uk Heart Line Association www.heartline.org.uk High Blood Pressure Foundation www.hbpf.org.uk
Hemiplegia Hemihelp www.hemihelp.org.uk HemiHelp, 6 Market Road, London. N7 9PWTel: 0845 120 3713Email: [email protected]
Provides information and support.
Hepatitis Hepatitis B Foundation UK www.hepb.org.uk Hepatitis C Trust www.hepctrust.org.uk
Hereditary Motor and Sensory Neuropathies
CMT International UK www.cmt.org.uk CMT United Kingdom 98 Broadway Southbourne Bournemouth BH6 4EH UK
T: 0800 6526316 M: 01202 432048 [email protected]
Provides information and support and supports research.
Hernia British Hernia Centre www.hernia.org 87 Watford Way LONDON, England NW4 4RSTel: 020-8201 7000 Email: [email protected]
Information and claims to provide all answers needed for your research.
Herpes The Herpes Viruses Association www.herpes.org.uk 41 North RoadLondonN7 9DPTel: 0845 1232305Email: [email protected]
Information to help sufferers to help themselves.
31
Hirschsprung'sHirschprung's & Motility Disorders Support Network www.hirschsprungs.info The WillowsForest RoadNarboroughLeicestershireLE19 3LDTel: 07935787776.
Offer help, support and advice.
HIV and AIDSChildren with AIDS Charity www.cwac.org HIV treatment information base http://i-base.info/home/ Jewish Sexual Health Charity http://jat-uk.org/ National AIDS Trust www.nat.org.uk Positively Women www.positivelywomen.org.uk
Hughes SyndromeHughes Syndrome Foundation www.hughes-syndrome.org
The Hughes Syndrome FoundationLupus UnitGassiot HouseSt Thomas' HospitalLondon SE1 7EH
Telephone: 020 7188 8217 Email: [email protected]
Dedicated to promoting awareness and funding research into Hughes Syndrome.
Huntington’s DiseaseHuntington’s Disease Association www.hda.org.uk Email: [email protected]: 0151 2983298
Provides information, advice and support.
HyperactivityThe Hyperactive Children’s Support Group www.hacsg.org.uk The Hyperactive Children's Support Group, 71 Whyke Lane, Chichester, West Sussex PO19 7PDEmail: [email protected]: 01243 539966
Provides information, advice and support.
HypermobilityThe Hypermobility Syndrome Association www.hypermobility.org 49 Orchard CrescentOrestonPlymouthPL9 7NFTel: 0845 345 4465
Provides information, advice and support.
Hypomelanosis of ITOHITS UK Family Support Network www.e-fervour.com/hits HITS (UK) Family Support Network National Contact and Co-ordinator - Sandra Field 33 Fernworthy Close Torquay Devon
Family support group.
32
Hypoparathyroidism Hypoparathyroidism UKwww.hpth.org.uk/home.php Tel: 01342316315
Provides information, advice and support and campaigns for research.
Hypospadias Hypospadias Support Groupwww.hypospadias.co.uk/cgi-bin/yabb2/YaBB.pl
Online support forum.
Hysterectomy The Hysterectomy Association www.hysterectomy-association.org.uk
Information source.
Ichthyosis/Lamella/CollodianIchthyosis Support Group (ISG)
www.ichthyosis.co.uk Ichthyosis Support Group,PO Box 1404 Bagshot GU22 2LS UKTel: 0845 602 9202
Email: [email protected]
An online network.
Immune Deficiency Syndromes
Primary Immunodeficiency Association
www.pia.org.uk
Alliance House,12 Caxton Street,London, SW1H 0QS.
Tel: 020 7 976 7640
Email: [email protected]
Information, support and fund research.
Immune Thrombocytopenic Purpura
Immune Thrombocytopenic Purpura Support Association
www.itpsupport.org.uk The ITP Support Association"Synehurste" Kimbolton RoadBolnhurstBedfordshireMK44 2EWUnited Kingdom
Email: [email protected]
Provides information, advice and support.
34
ImmunisationJustice Awarness and Basic Support (support group for vaccine damaged children) www.jabs.org.uk The Informed Parent www.informedparent.co.uk
ImpotenceThe Sexual Dysfunction Association www.sda.uk.net
The Sexual Advice AssociationSuite 301, Emblem House,London Bridge Hospital 27 Tooley StreetLondonSE1 2PR
Telephone: 020 7486 7262
Email: [email protected]
Offers advice on male and female sexual problems.
InfertitlityFamilies Following Assisted conceptionwww.infertilitynetworkuk.com/acebabes/ Donor Conception Network www.dcnetwork.orgPreconception Care www.foresight-preconception.org.uk Infertility Network UK www.infertilitynetworkuk.com Support for the Involuntarily Childless www.infertilitynetworkuk.com/moretolife/
InsomniaThe Sleep Council www.sleepcouncil.org.uk The Sleep CouncilHigh Corn MillChapel HillSkiptonNorth Yorkshire BD23 1NLTel: 0845 058 4595Email: [email protected]
Sleep advice and information.
Interstitial CystitisInterstitial Cystitis Support Group www.cobfoundation.org
Irritable Bowel Syndromewww.thegutrust.org
IVF/ Egg Donationwww.daisynetwork.org.uk
Keratoconuswww.keratoconus-group.org.uk
Kidney/ Kidney CancerBritish Kidney Patient Association www.britishkidney-pa.co.uk UK National Kidney Association www.kidney.org.uk
35
Klinefelter’s SyndromeKlinefelter Organisation www.klinefelter.org.uk Klinefelter Syndrome Association UK www.ksa-uk.co.uk
Krukenbergs Spindle and Pigment Dispersion Syndrome
Krukenbergs Spindle Support www.krukenbergs-spindle.co.uk
Landau Kleffner SyndromeFOLKS (Friends of Landau Kleffner Syndrome) www.friendsoflks.com
LaryngectomyNational Association of Laryngectomee Clubs www.laryngectomy.org.uk
Laurence-Moon-Bardet-Biedl Syndrome
Laurence-Moon-Bardet-Biedl Society www.lmbbs.org.uk
Learning Difficulties/Learning Disabilities
www.break-charity.org www.bibic.org.ukwww.fpld.org.ukwww.mencap.org.ukwww.rescare.org.ukwww.unitedresponse.org.uk
Leukaemiawww.elf-fund.org.uk www.leukaemiacare.org.uk/1/home.htmlwww.beatbloodcancers.org
LeukodystrophyThe British Trust for the Myelin Project www.myelinproject.co.uk/frameset/core.htm
Lynda Carthy, Manager139 Hulme Hall RoadCheadle HulmeCheadleCheshireSK8 6LQ
T: 0161 2923191 email: [email protected]
News, research findings and information as well as personal accounts from sufferers and their families.
Lichen SclerosusNational Lichen Sclerosus Support Group www.lichensclerosus.org
Fabia BrackenburyFlat 91 Homecourt House, Bartholomew Street West, Exeter EX4 3AE
Email: [email protected]
Information and calls for research participation.
36
LiverThe British Liver Trust www.britishlivertrust.org.uk The Children’s Liver Disease Foundation www.childliverdisease.orgObstetric Cholestasis Support and Information Service www.ocsupport.org.ukThe PBC Foundation (UK) www.pbcfoundation.org.ukPSC Support www.psc-support.demon.co.uk Primary Sclerosing Cholangitis Trust www.psctrust.com
Lowe SyndromeLowes Syndrome Association www.lowesyndrome.org LSAPO Box 864346 Plano, Texas 75086-4346
Information, support, networking and research.
Lower Limb AbnormalitiesSTEPS www.steps-charity.org.uk helpline 01925 750271 Email [email protected]
Information, support, networking and research.
LungThe British Lung Foundation www.lunguk.org SILA (Sarcoidosis and Interstitial Lung Association) www.sila.org.uk
LupusLupus UK www.lupusuk.org.uk
Information, support, regional groups and grants for research.
Lyme DiseaseEuroLyme www.health.groups.yahoo.com/group/eurolyme Lyme Disease Action www.lymediseaseaction.org.uk
LymphoedemaLymphoedema Support Network www.lymphoedema.org
Lymphoedema Support NetworkSt. Luke's CryptSydney StreetLondonSW3 6NH
Telephone: 020 7351 0990 Email: [email protected]
Information for patients and health professionals and support.
LymphomaLymphoma Association www.lymphoma.org.uk PO Box 386AylesburyBucksHP20 2GATel: 0808 808 5555
Information and support for patients, their families and friends. Also an online forum.
Macular DiseaseMacular Disease Society www.maculardisease.org PO Box 1870, Andover, SP10 9ADTel: 01264 350551 Email: [email protected]
Information, support, regional groups and conducts research.
37
Madelung Wrist DeformityMadelung Wrist Deformity Self Help www.divdev.fsnet.co.uk/dysch.htm Contact details are only to join the group as it is run by a volunteer.
A support group that has information in several languages as well.
Mal de Debarquement Syndrome
MdDS UK Support Group www.mdds.org.uk Information and support
Malignant Hyperthermia British Malignant Hyperthermia Association www.bmha.co.uk Leeds MH Invest igat ion Uni t St . James Hospi ta l Becke t t S t ree t Leeds LS9 7TF Tel : 0113 206 5270
Information, support and fund raising for research.
MarfanMarfan Association UK www.marfan-association.org.uk Rochester House5 Aldershot RoadFleetHampshireGU51 3NG Tel: 01252 810472 Email: [email protected]
Support, education and research.
Meniere’s DiseaseThe Ménière's Society www.menieres.co.uk
The RookerySurrey Hills Business ParkWottonDorkingSurreyRH5 6QT
Tel: 01306 876883
Information and support.
MeningiomaMeningioma UK www.meningiomauk.org Tel: 01787 374 084 Email: [email protected]
Information and support.
MeningitisMeningitis Research Foundation www.meningitis.org Meningitis Trust www.meningitis-trust.org
MenopauseThe Daisy Network www.daisynetwork.org.uk Support group for women who have
had a premature menopause.
Mental HealthArbours Association www.arbourscentre.org.uk Ex-Services Mental Welfare Society www.combatstress.org.uk MENCAP www.mencap.org.uk Mental Health Foundation www.mentalhealth.org.uk Mental Health Matters www.mentalhealthmatters.com Mental Health Media www.mhmedia.com
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MIND www.mind.org.uk Philadelphia Association www.philadelphia-association.co.uk Rethink www.rethink.org SaneLine www.sane.org.uk together www.together-uk.org Young Minds Trust www.youngminds.org.uk Zito Trust www.zitotrust.co.uk
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Metabolic DiseasesCLIMB (Children Living with Inherited MetaBolic Diseases) www.climb.org.uk National Society for Phenylketonuria www.nspku.org Organic Acidaemias http://myweb.tiscali.co.uk/priddy/ PUMPA (Purine Metabolic Patients Association) www.pumpa.org.uk Society for Mucopolysaccharide Diseases www.mpssociety.co.uk
MicropthalmiaMicropthalmia and Anopthalmia Children's Societywww.macs.org.uk
MACS (Registered Office)PO Box 92HolyheadLL65 9AW
Tel: (FREEPHONE) 0800 169 8088
Support and information.
MigraineMigraine Action Association www.migraine.org.uk Migraine Trust www.migrainetrust.org
MiscarriageMiscarriage Association www.miscarriageassociation.org.uk Scottish Care and Information on Miscarriage www.miscarriagesupport.org.uk
Mitochondrial DiseaseChildren's Mitochondrial Disease Network www.emdn-mitonet.co.uk MAYFIELD HOUSE 30 Heber WalkChester WayNorthwichCW9 5JBEnglandUK
Help & Information Line: 01606 43946Email: [email protected]
Information and support.
Mosaic Down SyndromeMosaic Down Syndrome UK www.mosaicdownsyndrome.org Email: [email protected] or [email protected]
Information and support for parents.
Motor Neurone DiseaseMotor Neurone Disease Association www.mndassociation.org Scottish Motor Neurone Disease Association www.mndscotland.org.uk
MRSAMRSA Action UK www.mrsaactionuk.net National Concern for Healthcare Infections www.nc-hi.com
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Multiple BirthsMultiple Births Foundation www.multiplebirths.org.uk TAMBA (Twins And Multiple Births Association www.tamba.org.uk
Multiple Endocrine NeoplasiaThe Association for Multiple Endocrine Neoplasia Disorders ( AMEND) www.amend.org.uk
AMEND Admin Office The WarehouseNo 1 Draper StreetSouthborough, Tunbridge WellsKent, TN4 0PG Tel: 01892 516076 Email: [email protected]
An International patient group.
Multiple SclerosisMS Trust www.mstrust.org.uk Multiple Sclerosis Resource Centre www.msrc.co.uk Multiple Sclerosis Society www.mssociety.org.uk
Multiple System AtrophySarah Matheson Trust www.msaweb.co.uk
Muscular DystrophyDuchenne Family Support Group www.dfsg.org.uk FSH-MD www.fsh-group.org Muscular Dystrophy Campaign www.muscular-dystrophy.org
Myalgic Encephalomyelitis/Myalgic Encephalopathy (ME)
25% ME Group www.25megroup.org Action for ME www.afme.org.uk Association of Youth with ME www.ayme.org.uk Help with ME www.helpwithme.com ME Association www.meassociation.org.uk National ME Centre www.nmec.org.uk
Myasthenia GravisMyasthenia Gravis Association www.mga-charity.org
MyelomaMyeloma UK www.myeloma.org.uk
Nail-Patella SyndromeNail-Patella Syndrome UK www.npsuk.org
NarcolepsyUKAN www.narcolepsy.org.uk
NeurofibromatosisNeurofibromatosis Association www.nfauk.org
Niemann-Pick DiseaseNiemann-Pick Disease Group www.niemannpick.org.uk
NystagmusNystagmus Network www.nystagmusnet.org
OsteopetrosisOsteopetrosis Support Trust www.osteopetrosis.co.uk
OsteoporosisNational Osteoporosis Society www.nos.org.uk/netcommunity/page.aspx?pid=183
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Paget's DiseaseNARPD www.paget.org.uk
PainPain Concern www.painconcern.org.uk PainSupport www.painsupport.co.uk
Email: [email protected]
PancreatitisPancreatitis Supporters Network www.pancreatitis.org.uk
Parkinson's DiseaseParkinson's Disease Society www.parkinsons.org.uk
ParuresisUK Paruresis Association www.ukpt.org.uk
Pelvic PainPelvic Pain Support Network www.pelvicpain.org.uk
Pemphigus VulgarisPemphigus Vulgaris Network www.pemphigus.org.uk
Peripheral NeuropathyNeuropathy Trust www.neurocentre.com
Pernicious AnaemiaThe Pernicious Anaemia Society www.pernicious-anaemia-society.org
Perthes DiseasePerthes Association www.perthes.org.uk
Pesticide ExposurePesticide Action Network www.pan-uk.org UK Pesticides Campaign www.pesticidescampaign.co.uk
PhobiaAnxiety Care www.anxietycare.org.ukFearFreeFlying (fear of flying/aerophobia) www.fearfreeflying.co.uk First Steps to Freedom www.first-steps.org No Panic www.nopanic.org.uk OCD Action www.ocdaction.org.uk OCD UK www.ocduk.org OCD World www.ocd-world.org.uk Triumph Over Phobia (TOP UK) www.topuk.org
Pick's DiseasePick's Disease Support Group www.pdsg.org.uk
PolioBritish Polio Fellowship www.britishpolio.org.uk
Polycystic Ovary DiseaseVERITY www.verity-pcos.org.uk
PorphyriaBritish Porphyria Association www.porphyria.org.uk
Post-Natal Depression/Post-Natal Illness
PNI Org UKwww.pni.org.uk
Prader-Willi SyndromePrader-Willi Syndrome Association (UK) www.pwsa.co.uk
Pre-EclampsiaAPEC (Action on Pre-EClampsia) www.apec.org.uk PETS (Pre-Eclampsia Toxaemia Society)
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Premature Babies/Special Care
BLISS www.bliss.org.uk
Premenstrual SyndromeNAPS (National Association for Premenstrual Syndrome) www.pms.org.uk
Primary Ciliary DyskensiaPCD Family Support Group www.pcdsupport.org.uk
Primary Sclerosing Cholangitis
Primary Sclerosing Cholangitis Support Group www.psc-support.demon.co.uk Primary Sclerosing Cholangitis Trust www.psctrust.com
Progressive Supranuclear Palsy
PSP Association www.pspeur.org
ProstateProstate Help Association www.prostatehelp.me.uk Prostate Research Campaign www.prostateuk.org
PsoriasiPsoriasis Association www.psoriasis-association.org.uk Psoriasis Help www.psoriasis-help.org.uk Skincell International www.skincell.org
Psoriatic ArthropathyPAPAA (Psoriasis and Psoriatic Arthritis Association) www.papaa.org
Rare Chromosome DisordersUNIQUE (Rare Chromosome Disorders Support Group) www.rarechromo.org
Raynaud'sRaynaud's & Scleroderma Association www.raynauds.org.uk
Reflex Anoxic Seizure/Reflex Asystolic Syncope
STARS (Syncope Trust And Reflex Anoxic Seizure) www.stars.org.uk
Repetitive Strain InjuryLondon RSI Support Group www.londonrsisupportgroup.org.uk
Retinitis PigmentosaBritish Retinitis Pigmentosa Society www.brps.org.uk
RetinoblastomaChildhood Eye Cancer Trust www.chect.org.uk
Rett SyndromeRett Syndrome Association (UK) www.rettuk.org
Reye's SyndromeNational Reye's Syndrome Foundation www.reyessyndrome.co.uk
SchizophreniaRethink www.rethink.org
ScoliosisScoliosis Association (UK) www.sauk.org.uk Scoliosis Support Site www.scoliosisnutty.com
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Seasonal Affective DisorderSAD Association www.sada.org.uk
Shingles and PHNShingles Support Society www.shinglessupport.org
Shwachman-Diamond Syndrome
Shwachman-Diamond Support http://sdsuk.org/index.htm
Sickle CellSickle Cell Society www.sicklecellsociety.org
Sjögren's SyndromeBritish Sjögrens Syndrome Association www.bssa.uk.net
Skeletal DysplasiaSkeletal Dysplasia Group www.skeletaldysplasiagroup.org.uk
Sleep Apnoea/SnoringBritish Snoring and Sleep Apnoea Association www.britishsnoring.co.uk Sleep Apnoea Trust www.sleep-apnoea-trust.org
Sleeping Pill AddictionTASHA www.tasha-foundation.org.uk
Smith-Magenis SyndromeSmith-Magenis Syndrome Group www.smith-magenis.co.uk
Speech Problems/Stammering
AFASIC www.afasicengland.org.uk Aidis Trust www.aidis.org British Stammering Association www.stammering.org I CAN www.ican.org.uk Michael Palin Centre for Stammering Children www.stammeringcentre.org Talking Point www.talkingpoint.org.uk
Spina BifidaASBAH (Association for Spina Bifida And Hydrocephalus) www.asbah.org
Spinal Injury and TumourAspire www.aspire.org.uk Back-Up Trust www.backuptrust.org.uk Spinal Injuries Association www.spinal.co.uk
Spinal Muscular AtrophyJennifer Trust for Spinal Muscular Atrophy
www.jtsma.org.uk
Stickler SyndromeStickler Syndrome Support Group
www.stickler.org.uk
StillbirthSANDS (Stillbirth And Neonatal Death Society)
www.uk-sands.org
StomaColostomy Association www.colostomyassociation.org.uk Ileostomy & Internal Pouch Support Group www.iasupport.org Urostomy Association www.urostomyassociation.org.uk
StrokeDifferent Strokes (for Young Stroke Survivors) www.differentstrokes.co.uk
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Sturge Weber SyndromeSturge Weber Foundation www.sturgeweber.org.uk
Sudden Adult Death Syndrome
SADS UK www.sadsuk.org
SyringomyeliaThe Ann Conroy Trust www.theannconroytrust.org.uk
Tar SyndromeTar Syndrome Support Group www.ivh.se/TAR/
TelangiectasiaTelangiectasia Self Help Group www.telangiectasia.co.uk
Testosterone DeficiencyAndroids Testosterone Deficiency Centre www.androids.org.uk
ThalassaemiaUK Thalassaemia Society www.ukts.org
ThalidomideThalidomide Society www.thalidomidesociety.co.uk Thalidomide Trust www.thalidomide.org.uk
ThyroidBritish Thyroid Foundation www.btf-thyroid.org Thyroid UK www.thyroiduk.org.uk/tuk/index.html
Tourette SyndromeTourettes Action www.tourettes-action.org.uk
Toxic Shock SyndromeToxic Shock Syndrome Information Service www.tssis.com
Tracheo-Oesphageal FistulaTOFS www.tofs.org.uk
Treacher CollinsTreacher Collins Family Support Group www.treachercollins.net
Tuberous SclerosisTuberous Sclerosis Association www.tuberous-sclerosis.org
Turner SyndromeTurner Syndrome Support Society www.tss.org.uk
Vascular DiseaseCirculation Foundation www.circulationfoundation.org.uk
VitiligoVitiligo Society www.vitiligosociety.org.uk
Von Hippel-Lindau DiseaseVHL Contact Group www.vhlcg.com
Wegeners GranulamatosisStuart Strange Vasculitis Trust www.vasculitis-uk.org
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West SyndromeWest Syndrome Support Group www.wssg.org.uk
Williams SyndromeWilliams Syndrome Foundation www.williams-syndrome.org.uk
Wolf-Hirschorn SyndromeWHSSG (Wolf-Hirschorn Syndrome Support Group) www.whs4pminus.co.uk
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