Stichting Pitt Hopkins Syndroom
Wij geloven dat de juiste kennis over zeldzame aandoeningen het geluk en welzijn van mensen met deze aandoeningen, hun ouders, hun zussen en broers, hun familie en hun vrienden vergroot.
Dit doen wij door wezenlijke en bruikbare kennis van ouders en experts te delen met elkaar
We gebruiken hiervoor een online platform waarmee de juiste kennis beschikbaar wordt gemaakt. Ook kunnen hierop kennis workshops georganiseerd.
mission
We are committed to contributing to accurate diagnosis of problems with people having a rare-disease, to support research on aspects of the rare-disease, to helping people with the rare-disease, and to helping parents, siblings, grandparents, families, caregivers and physicians make informed decisions.
groupIntro
Leggi di più sulla nostra comunità...
I nostri volontari e sostenitori...
Chequita Ketelaar-Damen
Ingrid Benoist
Gerritjan Koekkoek
Piet Papavoine
Rete di competenze Stichting Pitt Hopkins Syndroom
La collaborazione aiuta....
La collaborazione con altre comunità familiari offre conoscenze condivise, forza di difesa, risorse comuni e un'accelerazione dei progressi della ricerca. Insieme, queste collaborazioni danno potere alle persone, amplificano le voci, fanno progredire i trattamenti e aumentano la consapevolezza, portando infine a un cambiamento positivo.
Di seguito sono riportati i nostri attuali partner
Marshall Smith Syndrome Research Foundation
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Vereniging Cornelia de Lange syndroom
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Stichting Pitt Hopkins Syndroom
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Nederlandse Vereniging Williams Beuren Syndroom
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Vereniging Angelman Syndroom Nederland
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Stichting Rubinstein-Taybi
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Stichting Tubereuze Sclerosis Nederland
