The Rudolf Marx Foundation supports children suffering from blood diseases
9 Dec 2022
Retired LMU physician Wolfgang Schramm builds bridges between medicine, science, and humanitarian policy. Through the Rudolf Marx Foundation for Hemostaseology, he promotes scientific research into blood clotting disorders and especially hemophilia.
The blood of people with hemophilia flows considerably slower than in other people. As a result, their wounds take a long time to heal. Moreover, the disrupted blood clotting can lead to internal bleeding that damages organs, muscles, and joints. Once known popularly as “the royal disease,” hemophilia is officially classed as “rare” and affects some 6,000 patients in Germany.
For physician Professor Rudolf Marx (1912-1990), every sufferer’s fate was one too many. At LMU’s University of Munich Hospital in 1953, he coined the term “hemostaseology” to describe the “stopping and stalling of blood” – that is to say, blood clotting and its disorders – and co-founded the journal Deutsche Arbeitsgemeinschaft für Blutgerinnungsforschung (German Working Group for Research into Blood Clotting). At the same time, he launched the Deutsche Hämophiliegesellschaft (German Hemophilia Association) to support people with the disease, the first organization of its kind in Germany. His research and treatment approaches have substantially improved the situation and outcomes of patients. Whereas 30 to 40 years ago children with hemophilia were still being sent home from school – the risk of infection with HIV was too great, people falsely thought – they can be helped today, following years of research and public education about infection risks.
Supporting research and helping sufferers directly
Professor Wolfgang Schramm, medical doctor, worked with Rudolf Marx at University of Munich Hospital for many years from 1973. After Marx’s death, the now 79-year-old wanted to continue his legacy and in 2008 founded the Rudolf Marx Foundation for Hemostaseology, a trust administered by Foundations@LMU.
The mission of the trust is to promote medical and care-relevant research in this field. “More attention should be paid to this area. After all, blood clotting also plays a major role in heart attacks, thromboses, and cancer – even the coronavirus,” emphasizes Schramm.
The foundation tries to help patients in various ways. One of the main routes is personal psychosocial counseling, which includes therapy weekends. The current focus is informed by a belief in the value of parent-child therapy, of which Rudolf Marx himself was a proponent. As hemophilia is a hereditary disease, people are affected from birth. “We want to bring patients, parents, and relatives together into a community,” explains Schramm. The illness of a child is a great mental burden on parents. “A young couple with a child who has hemophilia learns to deal with the disease better when they can share experiences with other parents and sufferers.”
Engagement across borders
International medical collaboration is another main focus of the foundation’s work. In the spirit of Rudolf Marx, for example, Schramm has been building bridges between doctors in Romania and Germany for 30 years.
Since the foundation in 1991 of the aid organization Bayerische Kinderhilfe Rumänien to support Romanian children in need – established with the politician Barbara Stamm – University of Munich Hospital has been cooperating closely with a university in the Romanian city of Timișoara to provide better care for hemophiliacs.
Wolfgang Schramm’s primary aim here is to make therapy more readily available and to ensure that Romanian children from less privileged backgrounds have access to specialized treatments.
Scientific exchange, political initiatives, and fundraising campaigns
The foundation also promotes scientific exchange. One way it does this is through the Wildbad Kreuth Initiative, which funds biennial symposia where the international research community can analyze improvements in therapies and the correct administration of new drugs. Its latest recommendations were officially adopted by the healthcare directorate of the Council of Europe and approved by the Council of the European Union. In addition, the foundation helps out in crisis situations, including the provision of short-term assistance. Thanks to its network, for example, the foundation was able to supply extensive relief aid to fleeing children and women in the first weeks of March 2022 following the Russian attack on Ukraine.
To continue helping hemophilia patients, the foundation is reliant on donations. Treatments can quickly run up costs of 100,000 euros, even millions of euros in some cases. For the pharmaceutical industry, this area remains economically attractive despite the small number of patients and the high costs: “It was once common for treatment centers to receive generous support via hospital operators, but in recent years the principle of sponsoring has lost a lot of ground in pharma companies,” says Schramm. Nowadays support is usually forthcoming only for small-scale studies to investigate a new drug from a manufacturer.
Establishing the Rudolf Marx Foundation at LMU was a deliberate choice in order to meet compliance requirements by ensuring due separation between research into drugs and patient care with drugs. “I’m very grateful to Foundations@LMU for the support and advice. We need to redouble our efforts in future to attract potential backers from the worlds of science, politics, and industry,” says Wolfgang Schramm.