Prof. Dr. Annette Grüters-Kieslich, in conversation with Prof. Dr. Corinna Grasemann, Director of the Department of Pediatrics and Adolescent Medicine at University Medical Center Mainz, highlighted structural challenges: “Centers for Rare Diseases pool crucial expertise, including on women’s health issues. But without stable funding and reliable registry data, this potential remains untapped.” A key to knowledge advancement is the National Registry for Rare Diseases (NARSE), which aims to create a sound basis for valid data in the future.
More Than a Medical Issue
The discussions emphasized: Rare diseases are not just a medical issue, but also a societal one. Affected individuals face a long odyssey toward diagnosis, poorly coordinated care structures, and lack of specialized contact points. For women, these problems intensify, as their symptoms are often misdiagnosed or missed altogether, and they tend to shoulder disproportionate daily responsibilities. A central takeaway from the forum: Only through gender-sensitive diagnostics, clear care pathways, and strong networks like the National Action Alliance for People with Rare Diseases (NAMSE) can lasting improvements be achieved.
Creating Visibility and Strengthening Structures
The event made clear how vital it is to bring greater attention to the situation of women with rare diseases. Our foundation is committed to making their voices heard and their burdens visible. We know: Recognition, visibility, and reliable structures are essential for everyone with a rare disease.
Watch the event recording: Expert Forum Health
