CeSER’s central Coordination Center is placed in the Department of Rare Diseases at the University Children’s Hospital of the St. Josef-Hospital (Catholic Clinic Bochum). The A-Center provides coordination services and advice to people with a Rare Disease, their families, their treating doctors, people with unclear diagnosis and Patient Organizations (Patient Advocacy Groups).
Another feature of the A-Center is direct involvement in network operations, activities, and strategy. The Center is a member of various networks as NRW-ZSE, TRANSLATE NAMSE and ZSE DUO. It participates in national and international consortia and organizations.
The A-Center’s collaborating Institutes and Centers participate in clinical studies of Rare Diseases to advance one of the overall Center’s objectives of studying Rare Diseases for accelerating the development of therapies and management tools, and improving the lives of individuals.
Suffering but no definitive diagnosis yet ?
Feel free to watch how we approach enquiries of patients who may be affected by a Rare Disease:
Our Services And Activities
- Patient Pathway Management for people with a Rare or suspected Rare Disease.
- Offering medical knowledge and specific expertise
- on Rare Diseases,
- on specialized Institutes and Centers
- on Patient Organizations.
- Assistance and advice to medical practitioners who take care of people with a Rare Disease to facilitate the access to specialized treatment.
- A tailored pathway for patients with a Rare Disease at the transitional stage of childhood and adolescent services into adult care.
- After prior appointment and case assessment people with an unspecified diagnosis can consult our medical specialists in an interdisciplinary advisory panel.
- Fostering collaborative research among scientists for a better understanding how particular Rare Diseases progress and to develop improved approaches for diagnosis and treatment.
- Development of and participation in Patient Registries of Rare Diseases.
Fostering and coordination of research activities.