Guy HodgsonOffice Manager

Who are EDS UK are and what do we do?

More information on the BLF

Questions from you

Who are EDS UK?

OfficeVolunteers

Trustees

Support Volunteers

Staff

MedicalAdvisory

Panel

Corporate Partners

Consultants

Area Coordinator

s

Trustees, staff & consultants

Support volunteers

Parents CoordinatorSarah Griffin

Partners CoordinatorMatt Hillman

Elders CoordinatorAngela Hunter

Child Protection SpecialistSharon Birch

Mens CoordinatorRobin Hoskins

Communities CoordinatorJulie Wilkes

What do we do?

Fundraise

Helpline

Awareness

Membership

MedicalResearch

Support

Lobby

Local Meetings

In July 2014 changed to The Ehlers-Danlos Support UK

Is a registered Charity and Company

Employment law Home visitsExpenses and receiptsData protectionCommunicationService to members

Have the Information Standard

Where can I find financial information on EDS UK?

More info about EDS UK

So….how important are you to our members ?

Use of Facebook?2015

September Survey

71% use the Facebook

groups88% less isolated

85% more

supported

70% more

engaged with the communit

y

81% more

emotionally

supported

1. Advice for yourself

2. Peer support

3. Support from EDS UK

4. Emotional support

Top 5 reasons for using closed Facebook

Groups

5. Area specific questions

Support Group Meetings2015

September Survey

34% attendSupport group

meetings

84% less isolated

85% more

supported

78% more

emotionally

supported

70% more

engaged with the communit

y

One – 43%

Two – 28%

Three – 9%

Four or more – 20%

How many meetings have you attended in the last 12

months

Distance

Reasons for not attending

Disappointed by previous meeting

No meeting booked yet

Meetings cancelled

Feel depressed seeing others with the conditionNot given enough notification of the meeting

Support Group Meeting feedback2015

September Survey

It was amazing to meet with like-minded and like-bodied people, who understood! I didn't have the usual explanations to perform; they knew immediately. It was marvellous to share all sorts of things which are impossible to find from doctors (who haven't the first clue) or any NHS facilities: how people react to certain medications; how successful surgeries have been; how to contact specialists for particular areas of need; whether the latest symptoms are related to EDS; how to manage......it is a lifeline and, although I have only recently begun to go, I am putting it as priority in my diary: that's what I will give my daily energy ration for. It's gold dust for me. I can't thank you enough.

So….how important are you to our members?

Friendship Supportive

Determination

Networking

Informative

Empowering

How much is the grant?

What can it be spent on?

What parts of the UK does it cover?

How long is it for?

What will the grant achieve?

Community matters project

Outcome 1:People with EDS regularly attending local support groups 350 people

People with EDS that are members of local groups and 1,500 people accessing online and/or other forms of peer support

People with EDS report feeling less isolated and more 80% of 1,500 engaged in their community people

Outcome 2: People with EDS report better understanding of managing 80% of 1,500 their health through gentle exercise and healthy eating people

People with EDS report participating in physical exercise 50% of 1,500 at least once per week people

People with EDS report feeling healthier and more active 50% of 1,500

Outcome 3:People with EDS regularly volunteering 50 people

Project volunteers reporting they have developed new skills 80% of 100 people

Project activities to achieve by end of year 445 local EDS support groups around England reaching 350 people through monthly meetings and 1,500 through providing moderated online group forums and email / telephone support. Provide comprehensive training and ongoing support to 50 Volunteer Area Coordinators and Volunteer Assistants

Hold 12 family days enabling over 1100 parents and children to meet up and share experiences with others who are experiencing similar

Any questions?