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Annual Membership Meeting: Athens 2009 - Presentations
Friday Afternoon - Saturday Morning - Saturday Afternoon - General Assembly Documents - Photos
Friday 8 MayAwareness Conference: “National Strategies for Rare Diseases: No policy without patients!”14.00 - 14.30Welcome speeches
- Marianna Lambrou, President of the Greek Alliance for Rare Diseases
- Prof. Antonios Trakatelis, MEP, Greece
- Ms May Papoulia, Wife of the President of the Hellenic Republic
14.30-15.00What is patient empowerment and how to foster it?Presentation:
- Terkel Andersen, President of Eurordis
15.00-15.30Commission Communication & Council Recommendation: What’s in the new European legislation for patients?Presentation:
- Christel Nourissier & Yann Le Cam, Eurordis
15.30-16.00National Plans for Rare Diseases: A pathway to improve RD patient’s care and quality of life?Presentation:
- Yann Le Cam, CEO Eurordis
16.30-17.45Roundtable debate: National Plans - From words to action?Presentation:
- Chair: Rosa Sanchez de Vega, Spain
- Dorica Dan, Romania / Marianna Lambrou, Greece / Christel Nourissier, France / Mirjam Mann, Germany
Saturday 9 MayParallel Workshops.
9.30 - 16.30Workshop 1 : Online CommunitiesModerators : Denis Costello, Eurordis (morning) & Mary Dunkle, NORD (afternoon)
Wisdom of the crowd & social innovation in the Rare Disease CommunityPresentation: Video:
- David Golub, Vice-President Mark Krueger & Associates, Inc, USA
Learning from the Duchenne Community
Presentations: Video:
- A European story: Elizabeth Vroom, founder of duchenne-community.org Netherlands
- A US story: Pat Furlong, founder of duchenneconnect.org
How the patient conversation can impact on research directions
Presentation:
- Denis Costello, Eurordis
Experience gained by NORD with online communities at inspire.com
Presentation:
- Mary Dunkle, Vice-President Communications NORD
Online communities as a vehicle for improving interactions between patients and medical professionals - a case study
Presentation:
- Dr. Manuel Armayones, Internet Interdisciplinary Institute, Open University of Catalonia
The Patients Like Me journey
Presentation: Video:
- Paul Wicks, Head of R&D, patientslikeme.com
Hands-on display of online community software for Rare Disease patients
Presentation:
- Margaret Hanley, WTG Technology, UK
9.30 - 16.30Workshop 2 : Patient Databases and RegistriesModerator : Christel Nourissier, Eurordis (morning) & Tsveta Schyns, ENRAH (afternoon)
Different tools to answer different questions on research and public health issues for rare diseases
Presentation:
- Dr Florence Suzan, Institut National de Veille Sanitaire, France
Round table: European databases - Different steps to build a European research network database
Presentations:
- Euro-Wilson, Stuart Tanner, University of Sheffield, Uk
- European Huntington’s Disease Network, Jamie Levey, France
Initiatives at Nordic level
Presentation:
- Stense Farholt, Centre for Rare Diseases, Aarhus University Hospital Skejby, Denmark
Outcomes of the EPPOSI workshop on registries, March 2009
Presentation:
- Stuart Tanner, University of Sheffield, UK
Input of families into the database of the International Rett Syndrome Association
Presentation:
- Gérard Nguyen, Association Française du Syndrome de Rett, France
Ownership of data and ethical issues
Presentation:
- Dr Simon Woods, Treat NMD, UK
Conclusions of the Workshop
Presentation:
09.30 - 13.00Workshop 3 : The Polka project to better empower patients in policyModerators : Lene Jensen, François Houyez
The Polka Project: A new approach to empower patient representatives
Presentation
- Lene Jensen Rare Disorders Denmark
Presentation of a Play Decide session
Presentation
- Aliki Giannakopoulou, Ecsite network of Science Museums
Conclusions of the Workshop
Presentation:
14.00 - 16.30Workshop 4 : The European Network of Rare Disease Help LinesModerator : Shane Lynam, Eurordis
Presentation
How to go about setting up a help line?
3 testimonies
- Dorica Dan, Romanian National Alliance for Rare Diseases
- Dr. Jan Traeger-Synodinos, University of Athens / Greek Alliance for Rare Diseases
- Vanesa Pizarro, Spanish Info Service for Rare Diseases
Presentations:
Why my patient group should be interested in joining the network.
What are the tools that have already been developed by the network?
- Marie-Claude Bergmann, Maladies Rares Info Services, France
Presentation:
What are the criteria for joining? What is the process?
Presentation:
- François Houÿez, Eurordis
Conclusions of the Workshop
Presentation:
General Assembly Documents05/2009