apresentação do powerpoint...social media @abcglobalall . abc4 conference. email...
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F. Cardoso, MD Director, Breast Unit, Champalimaud Clinical Center, Lisbon, Portugal
ESO Breast Cancer Program Coordinator ESMO Board of Directors & NR Committee Chair
EORTC Breast Group Past-Chair
WELCOME!
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TIME TO CHANGE!ESO-MBC International Task Force
The Breast 16, 9–10, 2007
Manuscripts available in www.abc-lisbon.org
Lin N, Thomssen C, et al. The Breast 22 (2013) 203-210
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Several online presentations: e-ESO sessions, Peer Voice Program, Advocates Online Sessions, Breast Cancer TV, …
ABC WORLD MAP
Portugal,
Spain
Canada
USA
Colombia
Brazil
Australia and
New Zealand
India
Japan,
Korea,
Taiwan
Malaysia
China,
Hong
Kong
Philippines
Egypt, Jordan,
Israel, Lebanon,
Algeria, Morocco
Norway,
Sweden,
Denmark
UK and
Ireland
Thailand,
Vietnam,
Singapore
Greece, Malta,
Tunisia, Croatia,
Serbia, Romania,
Cyprus, Turkey
France, Italy, Germany, Belgium,
Switzerland, Austria, Netherlands,
Poland
Russia
Saudi Arabia, Qatar,
U. Arab Emirates,
Iraq
South Africa
Costa Rica
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Fourth ESO-ESMO International Consensus Conference
ABC4 will be held under the High Patronage of His Excellency the President of the Portuguese Republic.
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• Long-term remissions: Challenges and controversies • Optimizing anti-HER-2 therapies for ABC • ABC Lecture - Silent voices speak: An advocate’s journey • The new management of luminal ABC • Clinical challenges • Inflammatory advanced breast cancer • Lost in translation! • Supportive and palliative care • A world of contrasts! • Management of triple negative ABC The program will include patient advocacy sessions developed in cooperation with the Patient Advocacy Committee: • Direct patient involvement in ABC research • Survivorship 101: Work, finances, home and emotional support • Registries, databases and statistical modelling: Making MBC count • Managing side effects, sexual issues and fertility
Programme Topics
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THE MAIN REASON AND GOAL OF ABC
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Simultaneous publication The Breast & Annals of Oncology
www.abc-lisbon.org ABC4
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The Guidelines Proccess
RESEARCH
CLINICAL PRACTICE
CLINICAL PRACTICE
RESEARCH
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ABC 4 Guidelines
• SCIENTIFIC ADVANCES
• What have we achieved in the last 2 years that is ready for implementation in clinical practice???
• OTHER (perhaps even more important) ADVANCES
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5 year survival rates for mBC still around 25%
5-year Survival Rates by Stage at Diagnosis (Female Breast Cancer, US SEER),
1992-1999 Compared with 2005-20111,2
1. American Cancer Society. Breast Cancer Facts & Figures 2003-2004. Atlanta, GA: American Cancer Society; 2003.
2. National Cancer Institute. SEER stat fact sheets: breast cancer. http://seer.cancer.gov/statfacts/html/breast.html. Accessed
July 31, 2015.
WHY?? CAN WE IMPROVE?
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http://seer.cancer.gov/statfacts/html/breast.html
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ESMO slides, L. Mattos-Arruda
TUMOR HETEROGENEITY
BIOLOGICAL EVOLUTION
Treatment Treatment
Response Resistance Response
Progression
TUMOR RESISTANCE TO THERAPY
J. Ribeiro & F. CardosoABC4
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• STOP ACCEPTING PFS BENEFIT ALONE AS THE MAIN GOAL
• OS MUST BE AT LEAST A CO-PRIMARY
• COLLECT POST-PROGRESSION DATA
• THINK OF INNOVATIVE TRIAL DESIGNS
• USE OF REAL WORLD DATA
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Characterize and understand exceptional responders
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Analysis suggests limited improvement in quality of life
for patients with mBC over the last decade
• An analysis of the trends in quality of life for mBC* indicates
that there has not been
significant improvement over the past decade2
• In fact, there has been a slight decrease in quality of life2
1. Here & Now, Novartis, 2013. 2. Global Status of Advances/Metastatic Breast Cancer, 2005-2015 Decade Report, March 2016.
Quality of life in patients with mBC as assessed
by EQ-5D, 2004-2012, Generic (non-Cancer
Specific) Health Utility Score2
*Analysis was based on a review of 132 articles, of which a quantitative analysis was conducted of 14 studies reporting QoL measure
values for mBC. Values are weighted based on sample size. This analysis indicates a numerical decrease over time. It does not intend to demonstrate
statistical significance
0.8
0.7
0.6
0.5
2004 2006 2008 2011 2012
EQ
-5D
Sco
re
0.7201
0.7423
0.6990 0.6914
0.6313
CAN WE DO BETTER?
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• STOP PRESCRIBING SO MUCH UNECESSARY CT
• NOT ALL PATIENTS NEEDS COMBINATION OF ET + TARGETED
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• DEVELOP BETTER AND SPECIFIC QoL TOOLS
• ASK EXPERTS FOR HELP WHEN CHOOSING QoL TOOLS AND ENDPOINTS
TitleImproving Health-Related Quality of Life in Metastatic Breast Cancer.
Taking stock of achievements and delivering better measurement?
Principal Investigator(s) &
contact details
Galina Velikova – University of Leeds, UK and EORTC QLG
Fatima Cardoso – Champalimaud Clinical Center Lisbon, Portugal and chair
of Breast Cancer Group
Group Membership of Principal
Investigator(s)
☒EORTC Quality of Life Group
☒Other EORTC group: Breast Cancer Group
Ongoing project:
Development of a QoL tool specific for ABC ABC4
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Ongoing project:
Development of Quality Indicators for ABC/MBC
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Cancer World 2012, M. Beishon
• TREAT PATIENTS ACCORDING TO GUIDELINES
• IN A MULTIDISCIPLINARY, SPECIALIZED TEAM ABC4
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• TRAIN THE NEW GENERATION OF ONCOLOGISTS
• INCREASE ONCOLOGY WORKFORCE IN DEVELOPPING COUNTRIES ABC4
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ACCESS TO CARE
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INFORMATION
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OTHER COSTS AND IMPACTS OF CANCER
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Taxonomy of the burden of treatment
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CANCER IN THE WORKPLACE
OBJECTIVES
• Assesses the challenges that cancer poses for employers • Examines workplace policies and practices to address the
needs of those affected by the disease • Explores possible measures to strengthen workplace support AB
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Cancer is becoming an increasing economic and health burden for society
• Loss in productivity of cancer survivors who were unable to return to paid work in the UK at £5.3bn in 2010 (US$8.2bn in 2010 value). (5) That figure could rise sharply if, as expected, the number of people in the UK with cancer doubles to 4m by 2030. (6)
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• Many who have been diagnosed with cancer do re-enter the workforce.
• Most are driven to do so by financial need; many report other benefits: it gives them a sense of normality, provides a routine and helps them to feel productive.
• Many face a number of struggles - having to cope with fatigue and other consequences of the cancer and its treatment.
• And more than one-third (37%) workplace discrimination against sufferers, especially in Asia-Pacific (49%).
• Major challenges for employers, too: Risk of lost productivity, lower morale, extra costs of providing cover during sickness absence.
Re-entering the workforce
CHANGE WORK-RELATED LAWS
Ability to work part-time, flexible timetables, …
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FINANCIAL IMPACT OF CANCER
• For the individual patient and family
• For society ABC4
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We strongly recommend the use of objective scales, such as the ESMO Magnitude of Clinical Benefit Scale or the ASCO Value Framework, to evaluate the real magnitude of benefit provided by a new treatment and help prioritize funding, particularly in countries with limited resources. (LoE: Expert opinion) (88%)
ESMO Magnitude of Clinical Benefit Scale AB
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Meaningful benefit is lacking in the vast majority of EMA-approved cancer medications over the last 5 years: 89% (95% CI 80.0e95.7) and 79% (95% CI 68.6e87.1) of therapies do not meet the clinical benefit threshold in the adapted and original ESMO-MCBS, respectively. AB
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N. Grössmann et al. EJC 2017 82, 66-71DOI: (10.1016/j.ejca.2017.05.029)
… cancer drug approvals based on surrogate outcomes have become more commonplace, lowering clinical trial costs, participant numbers, and follow-up times, but often still require postmarketing assessments of OS and QoL. And, although these studies are often delayed or fail to fulfil their obligations, the approval status remains firm.
Thus, surrogate outcomes lead to faster medicine access, but poor correlations with clinical benefit.
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Regarding the evidence for new cancer drugs, the bar has been dropping, which has been justified by the high benefit of new drugs. We showed, however, that the price of drugs was not related to their benefit to society and patients.
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• OTHER (perhaps even more important) ADVANCES
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WORLD CANCER RESOLUTION 2017
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• We align policy and advocacy research to the key needs of mBC patients in 16
countries across five dimensions.
• We evaluated using standardized criteria measuring the adoption and implementation
of NCCP goals and BC-specific policies and advocacy programs.
Approach: mBC Policy: Patient Journey Framework
The uniqueness of each program and impact on community is
evaluated and measured through collected outputs and outcomes
using tailored tools
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Key mBC
Policy
Components
Patient Awareness
& Engagement
Informed Providers
Screening Programs
HCP Specialists
Diagnosis Programs
Patient Registries
Care Pathway &
Integrated Care
Centers of Excellence
Early Access Programs
Regulatory Approval Process
Access & Reimburse-
ment
Support Programs
Research
Stakeholder Engagement & Patient Advocacy
• Across each stage, examples of advocacy initiatives and models of
promising practices were extracted from Susan G. Komen’s global portfolio
Approach: Advocacy promising practices across the patient journey
Awareness/
Recognition Diagnosis
Coordinated
Care Treatment
Ongoing
Management
Global Analysis of MBC Policy Gaps and Advocacy Efforts Across the Patient Journey
ORAL PRESENTATION
ABC 4
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A Policy Roadmap on Addressing Metastatic Breast Cancer
Expert Working Group on Metastatic Breast Cancer
a multi-stakeholder collaboration
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Novartis Oncology Franchise or Department
European Parliament Event and Reception
An Initiative on Breast Cancer
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Novartis Oncology Franchise or Department
My Time Our Time Campaign
Current initiatives at a glance
Ease communication between ABC
patients and their family and friends
ABC language/ dialogue adboard and guide
New Language of ABC: AdBoard
Value what time means to ABC patients
and their loved ones
Picture My Time Our Time - Instagram
Gallery, e-book , installation
Engage MEPs with reality of ABC patient
experience and value they bring to
society
European Parliamentary Reception
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Support the ABC Patient Journey
ABC Toolkit
A comprehensive resource Involve the caregiver
The Best of My Time Our Time Series
Videos/images from caregivers about caring
for their loved ones with ABC
Foster access and education on ABC
EU KOLs Ambassadors Meetings and
publication of reports
Fill the gaps and educate the current
Bloggers Community on ABC
Bloggers deep dive and toolkit
Raise awareness about ABC
Breast Cancer Awareness Month and
MBC Awareness Day
Dramatise ‘time’ through emotive
content; share day-to-day realities
Social Film
Sharable content via social media
Capture attention and spread awareness
Celebrity testimonial ABC social video
Social Media
Patients
Internal Engagement
Environment Shaping
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Seeding Progress and Resources for the Cancer
Community (SPARC)
Metastatic Breast Cancer Challenge
Empowering organisations worldwide
To address 4 particular priorities:
• Patient Navigation
• Voices for Change
• National Planning
• Earlier Presentation & Diagnosis
Run by Union for International Cancer Control, supported by Pfizer Oncology
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40 Organisations from 30 countries
2015
Countries
Australia
Brazil
Bulgaria
Colombia
Greece
Haiti
India
Israel
Malaysia
Mexico
Nigeria
Portugal
Rwanda
Spain
Thailand
Turkey
Uganda
Zambia
2017
Countries
Argentina
Australia
Cameroon
Canada
Cyprus
Ghana
Greece
Italy
India
Kenya
Kyrgyzstan
Mexico
Nigeria
Portugal
Philippines
Romania
Rwanda
Tajikistan
Trinidad &
Tobago ABC4
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US Collaborative Effort
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The ABC Global Alliance Continuing the work of the
ABC Consensus Conference and Guidelines
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ABC Global Alliance
Who We Are:
• A multi-stakeholder platform for all those interested in collaborating in
common projects relating to advanced breast cancer (ABC) around
the world
• Continuation of the work developed through the ABC International
Consensus Conference and Guidelines
• Launched during the World Cancer Congress in Paris on 3 November
2016
Our Vision:
• To improve and extend the lives of women and men living with ABC in
all countries worldwide and to fight for a cure
• Raise awareness of advanced breast cancer and lobby worldwide for
the improvement of the lives of ABC patients
NEXT F2F MEETING: linked to ABC4
Website www.abcglobalalliance.org
Social media @ABCGlobalAll
Email [email protected] ABC4
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1. Double median overall survival for patients with ABC to at least 4 years by 2025
2. Improve Quality of Life for patients with ABC in clinical practice
3. Improve availability of robust epidemiology and outcomes data for ABC
4. Increase availability and access to multidisciplinary care, including palliative, supportive, and psychosocial assistance for patients, families, and caregivers to ensure patients are receiving the best treatment experience
5. Strive for all patients with ABC to have financial support for treatment, care and assistance if unable to work
6. Offer communication skills training to all healthcare providers
7. Provide accurate and up-to-date ABC-specific information tools to all patients who want them
8. Increase public understanding of ABC
9. Improve access to non-clinical supportive services for ABC
10. Protect workforce rights for patients with ABC
ABC GLOBAL CHARTER 10 goals for the next 10 years
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AKNOWLEDGEMENTS
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The ABC Award is aimed at recognising a researcher, physician, nurse or patient advocate who has made an outstanding and impacting contribution in the field of advanced breast cancer throughout his/her career.
The third ABC Award - in recognition for her work and dedication to advocacy specifically to advanced breast cancer patients will be assigned to Musa Mayer ABC4 Award Ceremony NEW TIME: FRIDAY 3rd November
ABC Award
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Cooperations
ABC guidelines are developed by ESO and ESMO and published simultaneously in The Breast and Annals of Oncology journals. ABC guidelines and/or conferences have been endorsed and supported by several interantional oncology organisations
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ESO wishes to express its appreciation for the following sponsors for having granted their participation:
Sponsors
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ABC Patient Advocacy Committee
Evi Papadopoulos Europa Donna
Maria Joao Cardoso Mama Help
Dian "CJ" Corneliussen-James METAvivor
Anna Cabanes Susan G. Komen
Renate Haidinger Brustkrebs Deutschland e.V.
Shirley Mertz MBCN
Danielle Spence BCNA
Musa Mayer AdvancedBC.org
Bertha Aguilar Lopez ULACCAM
Gertrude Nakigudde Uganda Women’s Cancer Support Organisation
Danni Manzi Breast Cancer Care
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Coordinating Chair Fatima Cardoso Breast Unit, Champalimaud Clinical Center, Lisbon, PT Co-Chairs Elzbieta Senkus Dept. of Oncology and Radiotherapy, Medical University of Gdansk, Gdansk, PL Evi Papadopoulos Europa Donna, Nicosia, CY
Chairs Eric P. Winer Breast Oncology Center, Dana-Farber Cancer Institute, Boston, US
Larry Norton Breast Cancer Programs, Memorial Sloan-Kettering Cancer Centre, New York, US
Alberto Costa European School of Oncology Milan, IT and Bellinzona, CH Scientific Committee Members Matti S. Aapro MO Clinique de Genolier, Institut Multidisciplinaire d’Oncologie Genolier, CH
Fabrice André Department of Medical Oncology, Gustae Roussy Institute, Villejuif, FR
Nadia Harbeck Breast Centre, University of Munich, Munich, DE
Scientific Committee
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Bertha Aguilar Lopez, MX - Carlos H. Barrios, BR - Jonas Bergh, SE - Elizabeth Bergsten Nordström, SE –
Laura Biganzoli, IT - Christine B. Boers-Doets, NL - Anna Cabanes, US - Maria João Cardoso, PT - Lisa A. Carey, US -
Dian “CJ” M. Corneliussen-James, US - Javier Cortés, ES - Giuseppe Curigliano, IT - Véronique Diéras, FR –
Matthew J. Ellis, US - Nagi S. El Saghir, LB - Alexandru Eniu, RO – Lesley Fallowfield, UK - Prudence A. Francis, AU -
Karen Gelmon, CA - Mary K. Gospodarowicz, CA - Renate Haidinger, DE - Stephen R.D. Johnston, UK –
Bella Kaufman, IL - Smruti Koppikar, IN - Ian E. Krop, US - Danni Manzi, UK - Norbert Marschner, DE -
Musa Mayer, US - Shirley A. Mertz, US - Gertrude Nakigudde, UG - Birgitte V. Offersen, DK - Shinji Ohno, JP –
Olivia Pagani, CH - Shani Paluch-Shimon, IL - Frédérique Penault-Llorca, FR – Aleix Prat, ES - Hope S. Rugo, US -
Timo Schinköthe, DE - George W. Sledge, US – Danielle Spence, AU - Christoph Thomssen, DE –
Nicholas C. Turner, UK - Daniel A. Vorobiof, ZA - Nikhil Wagle, US - Binghe Xu, CN
All Faculty and panel members
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ESO’S STAFF
PRESS OFFICE ABC4
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In memory and honour of….
Our never forgotten HEROES!
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Margarida Marques
Strong, wonderful lady.
Small percentage of patients with uncontrollable pain, despite access to all available resources.
One of hardest lessons for our breast cancer team. We, despite all our knowledeg and experience, let her down in the end ... AB
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Francesca Balena
Founder, ABC Group within Europa Donna Italy
Francesca Balena, a woman who first started the battle for MBC patients in Italy by activating a blog called “to fight, to live, to smile”. Nobody will, patient or non patient, really ever understand how much she spent of her life for us all. This is a priviledge of those who had the chance to love her.
Ciao Francesca, unforgettable example of courage and love. We will never forget you. ABC4
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DORIS FENECH
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“What most amazed me was her compassion towards her patients , the way she used to explain the situation they were going through and re-assure them, when all the time she was going through the same situation herself. Some of the patients found out that she was going through cancer when they met with her at the Oncology hospital having her treatment.”
DORIS FENECH
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“Her main ambition was to start an MBC support group within Europa Donna Malta which she eventually did together with 2 other ladies in 2013.”
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“The keynote speech that she presented at the ABC 2 conference in Lisbon 2013 was a truly remarkable session , she was speaking from her experience and offering hope and support to all MBC patients everywhere, at the end she had a standing ovation from all the delegates, my colleague and I were very proud of her achievement.
She was invited to the ABC 3 conference to chair a session even though she was already very sick, I am very pleased that I had the opportunity to accompany her as the committee would not let her travel on her own.” (Her strong note about choice of drugs while in the panel) AB
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“Her daughter Pearl’s wedding was the highlight of her life in 2016, she was very busy preparing for the occasion by sewing the brides ,maids dresses helped by her sister. She was so very happy on the day.” AB
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“Her last conference was EBBC 10 in Amsterdam where she also chaired a session. I remember the Speakers dinner which she attended and was so happy to meet all the friends she had made over the years, I remember the laughter and warm feelings towards her during the evening. After 2 days that we arrived back home her daughter phoned to tell me that they had taken her to hospital where she died on the 25th March , the only consolation her family and friends are left with is that she did what she loved to do best till the end. I am very proud that I have known her these past years. Doris, you are gone but will never be forgotten, all the patients that you looked after are grateful for your hard work to make life a little better for them with your ongoing advocacy for better services. “
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WELCOME! ABC4
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