[Patient participation in medical care, taking rare retinal degenerations as examples]

Eight rare retinal degenerations were chosen to exemplify self-organisation and involvement of patient self-help groups in medical care. They were studied and supported in their development on the following levels: disease-specific groups (level 1), patient organisations (level 2), umbrella organisation (level 3). Databases of defined needs and concerns ("Themenspeicher") of disease-specific patient groups and of patient organisations with respect to care, research and patient networking were established. Priority concerns were implemented in the following areas: specialised medical care; quality assurance; quality management; expert panel with international dialogue of patients and physicians (including consensus statement on treatment recommendations); glossary internet portal; criteria for patient-oriented disease descriptions; structured documentation of patient experiences; patient management of health care records (paper bound and electronic health records). Apart from disease- specific approaches, interdisciplinary disease approaches were also applied, e.g. by contributing to the establishment of the German Alliance for Rare Diseases (ACHSE). This umbrella organisation has substantially improved chances for cooperation and patient advocacy. Patient participation was promoted by a federal regulation in 2004 ("Patientenbeteiligungsverordnung"). The example of rare retinal degenerations demonstrates the advantage of strong patient and umbrella organisations. Further development of qualified self-help resources is required for patient participation in rare diseases.