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

INTERVIEWS: Call for rare disease patients, relatives and professionals

  • You are affected by Huntington disease, Duchenne muscular dystrophy, chronic myeloid leukemia (CML), polycythemia vera (PV), Silver-Russel syndrome, Rett syndrome, galactosemia (type 1) or phenylketonuria ?
  • You have a relative affected by one of those rare diseases?
  • You are involved in the care of rare diseases patients affected by one of those rare diseases?

During the interviews, we will talk with patients (or their relatives) about their experience with care for their rare disease. Among other things, we will talk about the difficulties patients encounter to obtain a diagnosis, find a treatment and the necessary non-medical care, find health professionals, organize their daily lives and the financial, cultural, linguistic and geographical barriers which may hamper their national and cross-border care. Themes approached during interviews with professionals will be similar.

Click here to find more about the study.

Contact us to participate in our cross-border study on rare disease patients by sending us an email at mentioning “Study” or by filling the participation form here:

Subscription form

Hereunder, you will find a brochure and poster in order to inform potential participants, as well as a letter to health practitioners.