The Federal Ministry of Health (BMG), the Federal Ministry of Education and Research (BMBF) and the Alliance for Chronic Rare Diseases (ACHSE e.V.) are among those involved in the National Action Alliance for People with Rare Diseases (NAMSE).
NAMSE is intended to coordinate measures to improve the health situation of people with rare diseases and initiate actions in the field of rare diseases. After a three-year coordination process, 52 proposals for measures were developed and compiled in a National Action Plan for People with Rare Diseases. The proposed measures were published in August 2013.
The integration of telemedical applications in the outpatient care of patients with rare diseases is recommended in the National Action Plan’s information management telemedicine field of action. In the proposed measure 47, AmbulanzParter is presented as an example of best practice in existing care for the identification of suitable telemedical services for rare diseases.
AmbulanzPartner is intended to serve as an orientation for the telemedical networking of patients with rare diseases and service providers. AmbulanzPartner will support NAMSE in the implementation phase of the action plan, which is now beginning.
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