Professor Dr. Seideman: Rare Diseases - Letter to the Medical Comunity

Abstract:

Rare diseases frequently expose a systemic fault line in modern academic medicine: despite pioneering mandates, major institutions often decline or minimize the very patients who lack established protocols. This open letter illuminates the disconnect between the promise of university hospitals as hubs of innovation and their reluctance to adopt emerging data or invest in complex, unconventional conditions. Citing issues such as rigid departmental silos, resource limitations, and the fear of off-label liability, the letter challenges the medical community to transcend guideline-driven inertia. By embracing intellectual curiosity and genuine interdepartmental collaboration, we can transform rare-disease care from an afterthought into a catalyst for cutting-edge discovery.