Welcome speeches

• Marianna Lambrou, President of the Greek Alliance for Rare Diseases
• Prof. Antonios Trakatelis, MEP, Greece
  View Video of Prof. Trakatellis (Part 1)
• Ms May Papoulia, Wife of the President of the Hellenic Republic
  View Video of Ms. Papoulia

What is patient empowerment and how to foster it?

• Terkel Andersen, President of Eurordis

Presentation:

National Plans for Rare Diseases: A pathway to improve RD patient’s care and quality of life?

• Yann Le Cam, CEO Eurordis

Presentation:

Roundtable debate: National Plans - From words to action?

• Chair: Rosa Sanchez de Vega, Spain
• Dorica Dan, Romania / Marianna Lambrou, Greece / Christel Nourissier, France / Mirjam Mann, Germany

Presentation:

Moderators : Denis Costello, Eurordis (morning) & Mary Dunkle, NORD (afternoon)

Wisdom of the crowd & social innovation in the Rare Disease Community

• David Golub, Vice-President Mark Krueger & Associates, Inc, USA

Presentation: Video:

Learning from the Duchenne Community

• A European story: Elizabeth Vroom, founder of duchenne-community.org Netherlands
• A US story: Pat Furlong, founder of duchenneconnect.org

Presentations:

Video:

How the patient conversation can impact on research directions

• Denis Costello, Eurordis

Presentation:

Experience gained by NORD with online communities at inspire.com

• Mary Dunkle, Vice-President Communications NORD

Presentation:

Online communities as a vehicle for improving interactions between patients and medical professionals - a case study

• Dr. Manuel Armayones, Internet Interdisciplinary Institute, Open University of Catalonia

Presentation:

The Patients Like Me journey

• Paul Wicks, Head of R&D, patientslikeme.com

Presentation: Video:

Hands-on display of online community software for Rare Disease patients

• Margaret Hanley, WTG Technology, UK

Presentation:

Moderator : Christel Nourissier, Eurordis (morning) & Tsveta Schyns, ENRAH (afternoon)

Different tools to answer different questions on research and public health issues for rare diseases

• Dr Florence Suzan, Institut National de Veille Sanitaire, France

Presentation:

Round table: European databases - Different steps to build a European research network database

• Euro-Wilson, Stuart Tanner, University of Sheffield, Uk
• European Huntington’s Disease Network, Jamie Levey, France

Presentations:

Initiatives at Nordic level

• Stense Farholt, Centre for Rare Diseases, Aarhus University Hospital Skejby, Denmark

Presentation:

Outcomes of the EPPOSI workshop on registries, March 2009

• Stuart Tanner, University of Sheffield, UK

Presentation:

Input of families into the database of the International Rett Syndrome Association

• Gérard Nguyen, Association Française du Syndrome de Rett, France

Presentation:

Ownership of data and ethical issues

• Dr Simon Woods, Treat NMD, UK

Presentation:

Conclusions of the Workshop

Presentation:

Moderators : Lene Jensen, François Houyez

The Polka Project: A new approach to empower patient representatives

• Lene Jensen Rare Disorders Denmark

Presentation

Presentation of a Play Decide session

• Aliki Giannakopoulou, Ecsite network of Science Museums

Presentation

Conclusions of the Workshop

Presentation:

Moderator : 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?

• François Houÿez, Eurordis

Presentation:

Conclusions of the Workshop

Presentation:

• Agenda
• Activity Report
• Board of Directors Candidates
• Financial Report 2008
• Workplan 2009