WaihonaPedia

better life with a rare condition

As families and carers we learn and discover a lot. You can share this experience on WaihonaPedia.

Building and securing knowledge together with experts. To achieve a better quality of life for your whole family.

See our dream...

Welcome on our place especially for care-intensive¹ people.
WaihonaPedia responds to the needs of rare 'care-intensive people’ and their families, caregivers, teachers, doctors and therapists. These needs are;

• personalized information based on best available information and experiences of others,
• connection,
• asking questions and getting answers
• plan for the best possible quality of life

We do this by supporting international communities for these people. Explore the communities that already joined below to ho you can see and learn, know and share together with one of our communities. Can't find the community you're looking for? Request this to be supported

3q29 microdeletion syndrome

Angelman Syndrome

Autism Spectrum Disorder

Cornelia de Lange syndroom

CREBBP/EP300 Exon30/31

Dementie en verstandelijke beperking

Down Syndrome

Kleefstra syndrome

Malan syndrome

Marshall-Smith syndrome

Nicolaides–Baraitser syndrome

not Specified

Pierpont syndrome

Primrose syndrome

Pitt-Hopkins syndrome

Rubinstein-Taybi syndrome

Syndrome van Sturge en Weber

SATB2 syndrome

Tubereuze Sclerose Complex

Williams-Beuren syndroom

Wiedemann-Steiner syndrome

1. ^
   • care-intensive: a lot of care is needed. A care-intensive child is a child with a physical, mental or behavioural disability (or a combination thereof) that requires extra care.
     care-intensive: a word that we came up with, with which we focus on the experience of the care rather than the diagnostics. With something rare like the people in our communities, it is important that the family will remain upright. And that is what we are committed to help with; with heart and soul.