Closing event

Closing event of the EMRaDi project

Optimising rare diseases patients journey thanks to cross-border collaboration in the Euregio Meuse-Rhine


EMRaDi project closing event

Optimising pathways of rare diseases patients thanks to

cross-border cooperation in the Euregio Meuse-Rhine

17th February 2020

Liege, Palais des Congrès

After more than three years of cross-border cooperation, EMRaDi - the first INTERREG project on rare diseases in the EMR - comes to an end.

Join us during this day to find out the achievements made and build with us the next projects to improve the quality of life of people living with a RD.

Programme

9:30 – Welcome coffee

10:00 – Opening speech

Pascal Arimont, Member of the European Parliament

10:10 – INTERREG, much more than cross-border cooperation

Axel Noël – INTERREG Regional Antenna of Liège

10:15 – “Euregio Meuse Rhine Rare Diseases”: the EMRaDi project in short

Caroline Glaude, Mutualité chrétienne Verviers-Eupen

10:25 – Field analysis of existing RD patient pathways in the EMR: 104 testimonies to uncover the day to day reality of RD patients and their relatives
Joyce Loridan, Solidaris / Nationaal verbond socialistische mutualiteiten

Clara Noirhomme, Mutualités chrétiennes / Christelijke Mutualiteiten

11:15 – The situation of RDs in the EMR: Legal and financial provisions applicable to patients, data challenges for research and care models

Timo Clemens and Rok Hrzic, University of Maastricht



12:00 – Lunch



13:15 – The University Hospital perspective: recommendations to improve the network, awareness and training of health professionals?

Vincent Bours, CHU de Liège

Christopher Schippers, Uniklinik RWTH Aachen

Connie Stumpel, Maastricht UMC+

13:50 – A patients' perspective: the organisation of care in a cross-border region

Cor Oosterwijk, VSOP

14:20 – Break

14:50 – From EMRaDi 1.0 to EMRaDi 2.0

Caroline Glaude, Mutualité chrétienne Verviers-Eupen

15:10 – Official signing of the declaration of intention on cooperation on rare diseases in the Euregio Meuse-Rhine

15:15 – EMRaDi 2.0: What is your opinion on future projects to develop?

Participative discussion with the audience and a panel of professionals and patient representatives.

Saskia Bulk, CHU Liège

Jan de Jong, Hematon

Chantal Mathy, INAMI/RIZIV

Eva Schoeters, RaDiOrg

16:15 – Closing remarks

16:25 – Drinks

17:00 – End


Moderator for the day: Simone van Trier

- 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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Tw

17 02 2020

Liège