Moderator Dr. Martina Kloepfer, President of the Institute for Gender Health, opened the event with a clear observation: Although women and men show different disease courses, symptoms, and therapy needs, the German healthcare system still does not adequately reflect these differences.
Nora Seitz MdB, rapporteur for rare diseases in the CDU/CSU parliamentary group, also forcefully underlined this point: “We need a change of perspective. Symptoms of rare diseases in women are still all too often dismissed as psychosomatic. For too long, the male body has been the standard in medicine.” For her, one thing is clear: women’s health must cover all phases of life—puberty, pregnancy, menopause, and old age. “For modern healthcare, reliable progress in women’s health is needed. That’s why we’re laying the foundation for a multi-year research program that systematically addresses practical care topics like endometriosis, menopause, and obstetrics and brings solutions into mainstream care.” At the same time, she made it clear: “We still have a lot of work ahead.”
Women’s health as a “blind spot” in the system: a structural problem
Dr. Silke Heinemann, Head of the Department of “Medical and Professional Law as well as Prevention” at the Federal Ministry of Health, emphasized that women’s health is a personal priority for Federal Minister of Health Nina Warken, MdB: “The topic ranks high on our agenda, and we’re working to ensure that gender-sensitive care is not the exception, but the standard.” She named three key areas for action:
- NAMSE process: The National Action Alliance for People with Rare Diseases is an important forum with tangible successes. However, the topic of women’s health is (still) not part of the current 10-point plan.
- Departmental research at the Federal Ministry of Health: In the future, women’s health will be a funding focus to specifically support gender-related approaches.
- EU level: The JARDIN project is generating new European impetus for data-based, gender-sensitive care in rare diseases.
“We’re missing data” – lack of research as a central obstacle
Prof. Dr. Annette Grüters-Kieslich, Chair of the Eva Luise and Horst Köhler Foundation, made it clear in her keynote just how deeply the “gender data gap” is rooted in research: “It says a lot that it has only been mandatory since 2004 to include women in clinical trials in a defined proportion. The female body is different. This was not taken into account for a long time.”
Many rare diseases affecting women are complex systemic diseases requiring multidisciplinary expertise. But these care structures are often lacking. At the same time, there are numerous research ideas but almost no specific funding. The experienced pediatric endocrinologist also emphasized how crucial it is to anchor knowledge about gender differences in medical education and training: “We need to incorporate this knowledge into both the new licensing regulations and postgraduate medical training.” One example is the educational campaign of the Eva Luise and Horst Köhler Foundation for resident doctors, offering practice-oriented further training formats for rare diseases.
Making patients’ realities visible
From the perspective of patient organizations and self-help, it became clear just how much those affected still have to become their own experts due to structural hurdles. Patricia Carl-Innig from the Federal Association of Short-Statured People and Their Families stressed: “Patients are often the experts on their own condition. It is important to collect and make their knowledge available.” She pointed to special challenges across all life stages—from puberty to pregnancy to menopause. There is often a lack of specialists, especially at the interface between pediatrics and adult medicine.
Heike Seifert, founder of a self-help group for autoimmune liver diseases, also spoke openly about the reality of many affected: “The paths of suffering are often very, very long. Many things have to be fought for by patients themselves. This goes far beyond health issues. Family, everyday life, work—these are societal issues.” Self-help provides orientation and support but cannot compensate for structural deficits.
Outlook: Women’s health as a cross-cutting responsibility
All participants agreed: gender-sensitive care cannot depend on individual initiative. It needs clear political prioritization, sustainable funding, and binding structures in research, teaching, and care. Especially since much pioneering work is still being done in many areas, a systematic framework is now needed so that commitment does not just fizzle out. Or, as Dr. Silke Heinemann succinctly put it: “Pioneering work is fun, but only for a while. Now we need sustainable structures.”
To ensure that progress is not just sporadic but has a broad impact, women’s health and rare diseases must be considered as cross-cutting issues in all relevant processes—from NAMSE and licensing regulations to departmental research. The mandate for policymakers and institutions is clear: promote gender-sensitive research, strengthen multidisciplinary care, consolidate knowledge, and actively include those affected, so that women with rare diseases finally receive the attention and support they urgently need.
Photos: Werter GmbH
