Funding of rare disease research in Germany: a pilot study

Collectively, rare diseases are of major public health impact, but research on rare diseases poses major challenges. There are many deterrents for researchers to initiate rare disease projects and for funding agencies to grant support. It can be expected that rare disease research is underfunded, but no systematic assessments on rare disease funding practices were found in the literature. The recipients of grants for rare disease research were identified through the research reports of four German medical faculties, and data on external funding of individual projects were obtained through questionnaires and database mining. Response rates to questionnaires were unsatisfactory. The analysis was thus concentrated on a single faculty, Hannover Medical School, for which 100% data ascertainment was obtained. External funding for rare disease research at this faculty comprises 5.8% of all external research funding in 2006, and 3.8% in 2007. As the first study of this kind, this survey indicates enormous deficits and inequities in rare disease research.