EMR Rare Disease Day

EMR Rare Disease Day - 28th February 2019 - Maastricht

Rare diseases across the borders:
Europe and the Euregio Meuse-Rhine (EMR)

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:

  • 9:30h: Registration and coffee
  • 10:15h: Welcome and Opening
    • Opening: Cor Oosterwijk (director VSOP), Moderator for the entire day: Alex Puissant
  • 10:30h: Plenary session (1). European policy on rare diseases and cross border health care with emphasis on cooperation and coordination
  • 11:00h: Plenary session (2). EMRaDi project results: current situation, diversity and implications for patients
    • Caroline Glaude (EMRaDi project leader)
  • 11:30h: Joint-presentation between patient, HCP and European Reference Networks (ERN) representative/Healthcare insurer
    Topic 1: Awareness
    • Sigrid Hendriks (VSOP), Prof. Dr. Jean Muris (HAG University Maastricht)
  • 12:20h: Lunch
  • 13:15h: Joint-presentation between patient, HCP and European Reference Networks representative/Healthcare insurer
    Topic 2: Undiagnosed
    • Simon Kleijkers (Witte Raven), Prof Dr. Connie Stumpel (MUMC+)
  • 14:00h: Joint-presentation between patient, HCP and European Reference Networks representative/Healthcare insurer
    Topic 3: Cross border health care & cross border cooperation (Diagnosis, care and research)
    • Matthew Bolz-Johnson (EURORDIS), Prof Dr. Nicoline Hoogerbrugge (coordinator GENTURIS ERN)
  • 14:50h: Parallel workshops
  1. Awareness: Host Sigrid Hendriks (VSOP)
  2. Undiagnosed: Host Merel Klaassens (MUMC+)
  3. Cross border health care & cross border cooperation: Host: Matthew Bolz-Johnson, (EURORDIS) and Prof Dr. Nicolinne Hoogerbrugge (Coordinator GENTURIS ERN)
  • 15:20h: Break
  • 15:40h: Plenary feedback on workshops
    • Alex Puissant and Cor Oosterwijk
  • 15:50h: 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 (ERN coordinator), Prof. Dr. Vincent Bours (CHU Liège)
  • 16:35h: Closure/drinks
  • 17:00h: 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

 

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28 Feb 19

Maastricht

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