Information for patients
As a patient with a rare disease or patient relative,
you want to receive information that is specific to your situation.
The EMRaDi project ended on 31 March 2020, but the partners remain at your disposal to support and accompany you on your journey, thanks to their long experience in the field of rare diseases and cross-border healthcare.
To this end, they have created an information factsheet for rare disease patients and their relatives, containing information on medical and non-medical care available to rare disease patients in your region and in a cross-border context (in the Euregio Meuse-Rhine).
All the results of the project (final report, activity reports, the information factsheets and the declaration of intent) are now available.
Focus of the EMRaDi project : 8 selected rare diseases
The EMRaDi project focuses on specific rare diseases but also aims to help other rare disease patients and their relatives.
In Belgium
- Umbrella organization for patients with rare diseases
- RaDiOrg – Rare Diseases Organisation
- info@radiorg.be - +32 478 727 703
- RaDiOrg – Rare Diseases Organisation
- Belgian EMRaDi Partners and contact details of the coordinator of for each partner
- Mutualité chrétienne Verviers-Eupen (lead partner)
- Caroline Glaude - Caroline.Glaude@mc.be; info@emradi.eu
- Alliance Nationale des Mutualités Chrétiennes
- Clara Noirhomme - Clara.Noirhomme@mc.be; info@emradi.eu
- Solidaris - Union Nationale des Mutualités Socialistes
- Joyce Loridan – joyce.loridan@socmut.be
- Centre Hospitalier Universitaire de Liège
- Sylvie Taziaux – sylvie.taziaux@chu.ulg.ac.be
- Mutualité chrétienne Verviers-Eupen (lead partner)
In Germany
- Umbrella organization for patients with rare diseases
- ACHSE - Allianz Chronischer Seltener Erkrankungen
- info@achse-online.de - +49-30-3300708-0
- ACHSE - Allianz Chronischer Seltener Erkrankungen
- German EMRaDi Partner and contact details of the coordinator
- Universitätsklinikum Aachen - Zentrum für Seltene Erkrankungen Aachen
- Christopher Schippers - cschippers@ukaachen.de
- Universitätsklinikum Aachen - Zentrum für Seltene Erkrankungen Aachen
In the Netherlands
- Alliance of patient organizations for patients with rare diseases (and EMRaDi partner)
- Dutch EMRaDi Partners and contact details of the coordinator for each partner
- Universiteit Maastricht
- Timo Clemens - clemens@maastrichtuniversity.nl
- Maastricht Universitair Medisch Centrum+ / Academisch ziekenhuis Maastricht
- dr. C. Stumpel - c.stumpel@mumc.nl
- VSOP – see above (umbrella organization for patients with a rare disease)
- Universiteit Maastricht
In the European Union
- Alliance of patient organizations representing 751 rare disease patient organizations in 66 countries
EMRaDi closing event
On 17 February 2020, the closing event of the EMRaDi project took place.
The EMRaDi project partners presented at the Palais des Congrès in Liège, the results of more than three years of cross-border cooperation focused on improving the pathways of rare disease patients in the Euregio Meuse-Rhine (EMR).
EMR Rare Disease Day
On 28 February 2019, the EMRaDi consortium gathered more than 20 speakers and 120 participants on the occasion of Rare Disease Day at the Euregio Meuse-Rhine.
During this day, the preliminary results of the EMRaDi project were presented and the following question asked:
How can the health and quality of life of patients suffering from rare diseases be improved in the Euregio Meuse-Rhine, in cross-border regions and at European level?
This general question was examined using 3 key themes: awareness, patients undiagnosed/without diagnosis, as well as cross-boarder cooperation and healthcare.