a rare disease ?

Whether you are a man or a woman. A child, a teenager or a parent held by a rare disease.
Do you want to talk about your everyday life, the good and the bad times ?
Come tell us your story and share your experience in video.

I want to testify

Do you recognise yourself in these images ?

If so, know that you are not alone.

Join our community and tell us your story of your everyday life.

Story of Brownen :
Why do I testify ?