EMR Rare Disease Day

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
    • Sigrid Hendriks (VSOP), Prof. Dr. Jean Muris (general medicine Maastricht University)
  • 12.00: Lunch
  • 13.00: Joint-presentation 2
    • 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
  1. Cross border health care & cross border cooperation: Host: Matthew Bolz-Johnson, (EURORDIS) and Prof Dr. Nicoline Hoogerbrugge (coordinator ERN GENTURIS/Radboudumc)
  2. Awareness: Host Sigrid Hendriks (VSOP)
  3. 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
of participation for all participants

Accreditation points for physicians from Belgium and Germany have been requested.