Abstract
Rare diseases pose multiple challenges for patients, relatives, physicians,
nursing staff, and therapists. Their rarity impedes research and treatments
due to medical and economical reasons. Many diseases in the field
otorhinolaryngology, head and neck surgery are rare diseases due to their
low prevalence. The initiation of the right management processes requires
knowledge about diagnostics, resources like centers, networks and
registries, about specifics of the physician-patient relationship, follow-up
care including communication with family doctors and the role of self-help
groups. Of special interest for university hospitals and our scientific
society are the specific aspects of research including European networks and
research funding, information management, public relations, education,
training, financing, and regulations like orphan drugs and clinical trials
in small populations.
Key words
rare diseases - otorhinolaryngology - medical ethics - orphan drugs
