Why you should sign up

We are all affected by a rare condition, for different reasons. Perhaps you have the condition yourself, you are a parent, sibling, or you care for someone with a rare condition. Maybe you are a doctor, teacher or simply curious.

But what unites us is the understanding that sharing our experiences and knowledge is crucial.

You too have something to share, even if it is just to let people know you are involved. By listening, talking, learning and sharing again, we can make life with a rare condition more beautiful.

WaihonaPedia for families



Your Story

Tell us your story. Sharing stories helps families feel supported and creates a sense of community. Your story is important for all of us!



Discover a community of like-minded people and find support along your quest. Otherwise, start a community of your own - we'll help you. Either way, you are not alone!



Become an active member of your community. Share, discuss, ask questions and contribute. Everyone knows something, together we know everything!

So join one of our communities today!

Click here to register

Check out our communities at the bottom of these pages, you can also register with them directly

Współpraca pomaga....


Współpraca z innymi społecznościami rodzinnymi zapewnia wspólną wiedzę, siłę wsparcia, połączone zasoby i przyspieszony postęp badań. Razem, współpraca ta wzmacnia jednostki, wzmacnia głosy, przyspiesza leczenie i podnosi świadomość, ostatecznie napędzając pozytywne zmiany.

Zobacz naszych obecnych partnerów poniżej



Marshall Smith Syndrome Research Foundation

{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Marshall Smith Syndrome Research Foundation, showHeaderStatus=true, tileStatus=[]}

Vereniging Cornelia de Lange syndroom

{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Vereniging Cornelia de Lange syndroom, showHeaderStatus=true, tileStatus=[]}

Stichting Pitt Hopkins Syndroom

{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Stichting Pitt Hopkins Syndroom, showHeaderStatus=true, tileStatus=[]}

Nederlandse Vereniging Williams Beuren Syndroom

{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Nederlandse Vereniging  Williams Beuren Syndroom, showHeaderStatus=true, tileStatus=[]}

Vereniging Angelman Syndroom Nederland

{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Vereniging Angelman Syndroom Nederland, showHeaderStatus=true, tileStatus=[]}

Stichting Rubinstein-Taybi

{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Stichting Rubinstein-Taybi, showHeaderStatus=true, tileStatus=[]}

Stichting Tubereuze Sclerosis Nederland


About the website contents


All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

Send a email: info@rtsyndroom.nl