Calendar of our events

Warum organisieren wir Treffen?
Förderung des Erfahrungsaustausches z.B. Deutschlandtreffen im Zwei-Jahres -Rhytmus, Freizeiten oder Regionaltreffen.



Participate when it suits you

We have several participation options that are always open, pick your own time to study or help.


Whether you're looking for the next family gathering, a online workshop, or just want to see what's going on the world of a rare condition, the calendar of events has all the what, when and where you need.

Below you will see events about a rare condition hosted anywhere in the world.

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: 

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