WaihonaPedia
Linda Van de Wetering-Mak
"En Waihonapedia, el mundo de los padres y el de los expertos se encuentran para reunir y compartir una gran cantidad de información útil."
Ingrid Benoist
"Lo bueno de WaihonaPedia es que no solo podemos ayudarnos a nosotros mismos, sino también transmitir nuestras experiencias a otros que pueden beneficiarse de ellas."
Gerritjan Koekkoek
"Compartir y preservar el conocimiento tiene un valor incalculable para mejorar la calidad de vida. Contribuir a compartir y preservar el conocimiento es importante no sólo para el presente, sino también para las generaciones futuras."
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.
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!
Nuestra comunidad Mundial
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.
Participación Mundial
Comunidades: 14
Países: 33
Personas: 491
Condiciones: 22
Centros expertos: 16
Nuestros amigos
Together for Rare
We can improve the quality of Life enormously by sharing our experiences!Watch the dreams of Linda, Ingrid and Gerritjan
