News

Call

We need you to help us to identify the difficulties rare disease patients encounter in their daily life and care journeys in our regions.

Press release

On the occasion of its first anniversary, the partners of the EMRaDi project have issued a press release.

World Duchenne Awareness Day

7th September 2017: The project Rare Diseases in Euregio Meuse-Rhine supports World Duchenne Awareness Day

PATIENT SOUNDING BOARD: Call for patient representatives

You are part of a patient organization that represents Huntington disease, Duchenne muscular dystrophy, chronic myeloid leukemia (CML), polycythemia vera (PV), Silver-Russel syndrome, Rett syndrome, galactosemia (type 1) or phenylketonuria?

Selection of the rare diseases

The EMRaDi project focuses on eight rare diseases that are used as “tracers”, two diseases per disease group we focus on in EMRaDi project (syndromal, hematological, neurological, and metabolic rare diseases).