Board of directors

Shirley Feider-Rohen

President

A special education professional, still working part time in the domain of basic skills of adults.. Active as a volunteer in the field of rare diseases since 2010. Member of the National Rare Diseases Committee.

Being affected by a rare disease herself, she has experienced multiple challenges in everyday life. Nonetheless, she is convinced that the situation for people living with a rare disease can be improved. She greatly appreciates intensified networking activity between professionals and patients. Her motto: « Together we are stronger ».

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