19
Mar
2019

Participants and Partners Waihona

19
Mar
2019

Participants and Partners Waihona

Participants and Partners Waihona

The Association Cornelia de Lange Syndrome (CdLS) and Stichting Pitt Hopkins syndroom have taken the initiative to join forces with at least 7 patient group organizations to apply for this voucher project. The patient organisations that will be collaborating with in the Waihona project are listed below

  1. Association Cornelia de Lange syndrome (CdLS)
  2. Pitt Hopkins Syndrome Foundation
  3. MSS Research Foundation (Marshall-Smith)
  4. Association Angelman Syndrome Netherlands
  5. Network for rare diseases (ZeldSamen, previously VG Network)
    1. Association Williams-Beuren Syndrome 
  6. Foundation Tuberous Sclerosis Netherlands
  7. Rubinstein-Taybi Syndrome Foundation
  8. KansPlus, Network for parents of the mentally handicapped
  9. Prader-Willi Syndrome Foundation
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