EMR Rare Disease Day - 28th February 2019 - Maastricht
Rare diseases across the borders:
Europe and the Euregio Meuse-Rhine (EMR)
Material resulting from the day
- Summary of the results of the day
- PowerPoint presentations of the speakers
- Video in which participants reflect on the day
- Drawings illustrating the day
Approximately 6-8% of the EU population (27 to 36 million European citizens) are affected by a rare disease, which is often chronical, progressive and life-threatening.
This day is an opportunity to interact on the cross-border healthcare situation for rare diseases, focusing on how the care for rare diseases can be more accessible in Europe and to answer the question: How can we improve the healthcare and quality of life of patients affected by rare diseases in Euregio Meuse-Rhine, in border regions and at a European level?
This event takes place within the scope of INTERREG “EMRaDi” (Euregio Meuse-Rhine Rare Diseases) project. The conference is organized by VSOP (Dutch patient alliance for rare and genetic diseases) in collaboration with the Mutualité chrétienne Verviers-Eupen, Solidaris/UNMS, Alliance Nationale des Mutualités Chrétiennes, CHU de Liège, Uniklinik RWTH Aachen, Maastricht UMC+ and the University of Maastricht.
Programme of the day:
- 9.30: Registration and coffee
- 10.15: Welcome and Opening
- Opening: Cor Oosterwijk (director VSOP), Moderator for the entire day: Alex Puissant
- 10.30: Plenary session: EMRaDi project results: current situation, diversity and implications for patients
- Caroline Glaude (EMRaDi project leader)
- 11.10: Joint-presentation 1
Awareness
- Sigrid Hendriks (VSOP), Prof. Dr. Jean Muris (general medicine Maastricht University)
- 12.00: Lunch
- 13.00: Joint-presentation 2
Undiagnosed
- Els Vergouwen (patient perspective), Simon Kleijkers (Witte Raven), Prof Dr. Connie Stumpel (MUMC+)
- 13.45: Joint-presentation 3
Cross border health care & cross border cooperation
- Matthew Bolz-Johnson (EURORDIS), Prof Dr. Nicoline Hoogerbrugge (coordinator ERN GENTURIS/Radboudumc), Prof Dr. René Westhovens, UZ Leuven
- 14.45: Parallel roundtables
- Cross border health care & cross border cooperation: Host: Matthew Bolz-Johnson, (EURORDIS) and Prof Dr. Nicoline Hoogerbrugge (coordinator ERN GENTURIS/Radboudumc)
- Awareness: Host Sigrid Hendriks (VSOP)
- Undiagnosed: Host Prof Dr. Connie Stumpel (MUMC+)
- 15.30: Break
- 15.55: Plenary feedback on roundtables
- Alex Puissant and Cor Oosterwijk
- 16.05: Panel discussion and recommendations
- Matthew Bolz-Johnson (EURORDIS), Cor Oosterwijk (VSOP), Prof. Dr. Schulz (Uniklinik RWTH Aachen), Alain Coheur (Solidaris), Dr. Feldhoff (Policymaker from Germany), Prof. Dr. Nicoline Hoogerbrugge (coordinator ERN GENTURIS/Radboudumc), Prof. Dr. Vincent Bours (CHU Liège),
- 16.50: Closure
- 17.00: Drinks
- 17.30: End
Simultaneous interpretation in German, Dutch, French and English
Certificate of participation for all participants
Accreditation points for physicians from Belgium and Germany have been requested.