A conversation with ORDA’s president on her personal experience of a rare disease, stigma, and a national rare-disease registry.
In an episode of the “Seriously! with Maram” podcast, ORDA’s president Aydah Abu Eliem talks about her personal experience of a rare disease, the psychological and practical challenges patients and families face, and how that experience led her to found ORDA. The conversation covers social stigma, ORDA’s readiness to work with official bodies on a national rare-disease registry, and the Ministry of Health’s role in providing medicines.