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?
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).
