Tagesspiegel Health Forum:
Women with Rare Diseases
About four million people in Germany live with a rare disease. Their everyday life is often marked by lengthy diagnostic odysseys, insufficient treatment options, and a healthcare system that frequently fails to meet their complex needs. Women with rare diseases lose focus especially quickly – even though there have been indications of gender-specific differences in diagnostics, therapy, and clinical research for years.
Rare diseases are defined as diseases that affect fewer than five in 10,000 people. More than 8,000 such diseases are known in total – many start in childhood, are chronic, and significantly affect quality of life, participation, and life expectancy. While individual diseases are rare, the group of people affected is large. Specific care challenges are especially evident among women: symptoms are more often misinterpreted or seen as psychosomatic, gender-specific patterns of disease are understudied, and there is a lack of structured care pathways and specialized contact points.
Additional hurdles arise from structural barriers in access to diagnostics, innovative therapies, and in coverage of costs by health insurers. The lack of gender-specific consideration permeates research, teaching, and medical practice – with direct consequences for women with rare diseases.
The Alliance for Chronic Rare Diseases (ACHSE) therefore calls for clear steps toward better care in its latest position paper: more research, improved interdisciplinary networking, clear patient pathways, and a structured approach to specialized centers.
With the health forum “Women with Rare Diseases,” the Tagesspiegel Health Forum aims to help raise awareness of the special challenges facing affected women.
Experts from politics, medicine, science, patient advocacy, and industry will discuss together:
- How can diagnostics become more gender-sensitive?
- What political measures are needed to close structural care gaps?
- And how can health insurers and industry help improve care?
Speakers
- Dr. Ingeborg R. Borgheim
Spokesperson of the management board of Takeda in Germany - Prof. Corinna Grasemann
Head, Department of Pediatrics and Adolescent Medicine, University Medical Center Mainz - Nadine Großmann
FOP patient, engaged in research and patient organizations, participant in the “Women in Rare Disease” initiative - Prof. Annette Grüters-Kieslich
Chairwoman, Eva Luise and Horst Köhler Foundation - Dr. Silke Heinemann
Head of Department, Federal Ministry of Health - Prof. Maja Hempel
Professor and Head of Genetic Outpatient Clinic, University Hospital Heidelberg - Anne-Kathrin Klemm
Executive Board Member, BKK Dachverband - Karin Maag
Impartial Member, G-BA - Stefan Schwartze MdB
Federal Government Commissioner for Patient Affairs & Member of the SPD Parliamentary Group - Nora Seitz MdB
Specialist reporter for rare diseases, CDU/CSU Parliamentary Group - Kristina Sokolovic
Engineer in Switzerland, PBC patient, active in PBC patient self-help management - Prof. Gertraud Stadler
Head of Gender Research in Medicine (GiM), Charité – Universitätsmedizin Berlin.
The event is moderated by Marie Zahout, Editor, Tagesspiegel Background “Health & E-Health”.
Date
Wednesday, September 24, 2025 from 4:00 p.m. to 6:00 p.m., followed by a get-together
at the Tagesspiegel-Haus Askanischer Platz 3, 10963 Berlin
Please note that places for in-person participation in this event are limited.
