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?

The VSOP (Dutch national patient alliance for rare and genetic diseases) needs your participation in the Patient Sounding Board!

Within this board, consisting of patient representatives, we will discuss the experiences gained by the project members during the project. We will for example discuss the question of how national and regional policies for rare diseases can lead to better cooperation in the region, better (transnational) care, better funding and information. In 2019, it is also planned to organize a Rare Disease Day, where we would like to involve the Patient Sounding Board.

Our aim is the composition of the Patients Sounding Board to be representative of the eight different diseases and the five regions/three countries involved (Belgium, Germany and the Netherlands). The sounding board is expected to meet three times by mid-2019. Interpreters will be available and travel and accommodation costs will be reimbursed.

Would you like to participate in this sounding board? Contact us to by sending us an email at mentioning “Patient Sounding Board” or by filling the participation form here:

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