Stichting Rubinstein-Taybi Syndroom

ein Ort zum Sehen, Reden, Lernen und Teilen!!

WaihonaPedia

Ons doel is om het welzijn en het geluk van mensen met zeldzame aandoeningen en hun naasten te vergroten. Dit doen we door de communities van deze mensen te ondersteunen zodat essentiële kennis van families en experts met elkaar kan worden gedeeld. Wij nodigen deze communities uit om met elkaar samen te werken binnen ons samenwerkingsverband.

We will contribute to a better quality of life for families around a disease by helping communities to offer precisely that information to a family that will allow them to make the right decisions, to feel empowered with solutions and to get energy from support(ing) others with the same disease.

  


WaihonaPedia for Communities

  
 

1

Engage

Discover a new way of working that optimizes the sharing of information, organizing peer contact, and preserving acquired knowledge. 

2

Refocus

Supporting your community through our platform will save you time, money and efforts. Refocus on what really matters: your members!

3

Cooperate

Benefit from working together with others. Learn from each other and use each others knowledge to strengthen your own community. 


WaihonaPedia for families

1

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!
2

Discover

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!
3

Join

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

Unsere Gruppe weltweit

There are many people living with rare conditions that impact your well-being. This raises specific questions, such as: "Is treatment/healing possible, what does this mean for care and support or where can I get (financial) help?". This information is often difficult to find or not appropriate to personal circumstances.

Beteiligung weltweit

Anzahl der Communities: 14

Länder: 33

Anzahl der Personen: 493

Erkrankungen: 22

Expertisezentren: 16

Unsere Freunde

What is WaihonaPedia?

WaihonaPedia is a well-secured online platform that supports patient organizations in managing their community. It is your ultimate solution for individuals with rare diseases and their families. It provides a safe environment for sharing information, organizing peer support, arranging contact with experts, and documenting accumulated knowledge and experience.

Join our international community today and experience the power of connection and knowledge-sharing!

Network

WaihonaPedia offers global online communities where people can connect around issues that impact them while living with a rare condition.

Knowledge

We build up knowledge by gathering, sharing and preserving information and experiences to improve the quality of life of people around a rare condition.

Connection

WaihonaPedia is a safe meeting point where you can meet others like you. Learn from and support each other.

If you are interested in improving the way your patient organization works,

please contact us by e-mail.

find us on linkedIn (stichting WaihonaPedia)