WaihonaPedia
Our goal is to increase the well-being and happiness of people with rare diseases and their loved ones. We do this by supporting communities so that essential knowledge from families and experts can be shared with each other through our online platform and by organising knowledge workshops.
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.
Linda Van de Wetering-Mak
"In Waihonapedia, the two worlds of parents and experts meet, creating a treasure of useful information that is gathered and shared."
Ingrid Benoist
"The beauty of WaihonaPedia is that we can not only help ourselves, but also share our experiences with others who can benefit from them."
Gerritjan Koekkoek
Sharing and preserving knowledge is invaluable to improving quality of life. Contributing to the sharing and preservation of knowledge is important not only for the present, but also for future generations.
WaihonaPedia for Communities
Engage
Discover a new way of working that optimizes the sharing of information, organizing peer contact, and preserving acquired knowledge.
Refocus
Supporting your community through our platform will save you time, money and efforts. Refocus on what really matters: your members!
Cooperate
Benefit from working together with others. Learn from each other and use each others knowledge to strengthen your own community.
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
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!
Join
Become an active member of your community. Share, discuss, ask questions and contribute. Everyone knows something, together we know everything!
Notre communauté à l'échelle mondiale
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.
Participation à l'échelle mondiale
Communautés : 14
Pays : 33
Personnes : 491
Conditions: 22
Centres d'expertise: 16
Nos amis
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.
