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
Leia mais sobre a nossa comunidade...
Os nossos Voluntários e Apoiantes...
Chequita Ketelaar-Damen
Ingrid Benoist
Gerritjan Koekkoek
Piet Papavoine
Rede de peritos Stichting Pitt Hopkins Syndroom
A colaboração ajuda....
A colaboração com outras comunidades familiares oferece conhecimento partilhado, força de defesa, recursos comuns e progresso acelerado da investigação. Juntas, estas colaborações dão poder aos indivíduos, amplificam as vozes, fazem avançar os tratamentos e aumentam a consciencialização, conduzindo, em última análise, a uma mudança positiva.
Veja abaixo os nossos parceiros actuais
Marshall Smith Syndrome Research Foundation
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Marshall Smith Syndrome Research Foundation, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/kansplus/WebHome/logo.png?keepAspectRatio=true&height=100&rev=1.2){kind=logo}
KansPlus
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=KansPlus, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/corneliaDeLangeSyndroom/WebHome/cdls-nl-logo.png?keepAspectRatio=true&height=100&rev=1.1){kind=logo}
Vereniging Cornelia de Lange syndroom
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Vereniging Cornelia de Lange syndroom, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/pittHopkinsSyndrome/WebHome/logo.png?keepAspectRatio=true&height=100&rev=1.1){kind=logo}
Stichting Pitt Hopkins Syndroom
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Stichting Pitt Hopkins Syndroom, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/williams/WebHome/logo-nvwbs-small.png?keepAspectRatio=true&height=100&rev=1.1){kind=logo}
Nederlandse Vereniging Williams Beuren Syndroom
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Nederlandse Vereniging Williams Beuren Syndroom, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/angelman/WebHome/vasnlogo.png?keepAspectRatio=true&height=100&rev=1.2)
Vereniging Angelman Syndroom Nederland
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Vereniging Angelman Syndroom Nederland, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/rts/WebHome/rtsLogo.svg?keepAspectRatio=true&height=100&rev=1.2)
Stichting Rubinstein-Taybi
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Stichting Rubinstein-Taybi, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/stsn/WebHome/logo_stsn.png?keepAspectRatio=true&height=100&rev=1.1){kind=logo}
Stichting Tubereuze Sclerosis Nederland
