National action alliance for people with rare diseases
The National Action Alliance for People with Rare Diseases (NAMSE) is a coordination and communication body that was formed on March 8, 2010 through a joint declaration. With this merger, all those involved in the health sector were brought together at one table for the first time - patients, doctors, payers, university scientists as well as researchers from the biotechnical and pharmaceutical industry are to bundle existing initiatives and improve the networking of research and clinics.
Partner of the association
- Federal Ministry of Health (BMG)
- Federal Ministry of Education and Research (BMBF)
- Alliance for Chronic Rare Diseases (ACHSE eV)
- 23 other actors in health care.
Taking into account existing structures and European contexts, the NAMSE has developed proposals for better care for patients with rare diseases and specified them in a national action plan.
Working groups
The development of new measures and concepts takes place in four working groups.
- AG 1 - Information Management
- WG 2 - Ways to early diagnosis of rare diseases
- WG 3 - Supply, Centers, Networks
- AG 4 - Research
Individual evidence
- ↑ NAMSE - National Action Alliance for People with Rare Diseases
- ↑ http://www.namse.de/images/stories/Dokumente/Aktionsplan/national%20plan%20of%20action.pdf
Web links
- Care-for-Rare Foundation for children with rare diseases to intensify a global dialogue to promote science and research in the field of rare diseases in children