Ons doel is om het welzijn en het geluk van mensen met zeldzame aandoeningen en hun naasten te vergroten. Dit doen we door communities te ondersteunen zodat essentiële kennis van families en experts met elkaar kan worden gedeeld via ons online platform en door kennisworkshops te organiseren.


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.

Torna alla panoramica della comunità...

Unisciti alla comunità...

Informazioni ufficiali

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: