Shared decision making in rare diseases

Definition of the problemRare diseases pose manifold challenges to the healthcare system, e.g. how patients with arare disease can obtain equal access to medical care and research as people with adisease of high prevalence have. At the level of physician-patient interaction handling rare diseases requires special attention as wellespecially in regard to the process of shared decision making.ArgumentsTwo important aspects for shared decision making in case of rare diseases, well-informed patients and therapeutic uncertainty, are presented and analyzed with the examples of uterus transplantation and gene therapy.ConclusionIt is shown that shared decisions can serve as ahelpful concept and give guidance for physician-patient relationships in rare diseases, even though shared decision making is often performed perfunctorily.