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Tag: SMA

Study to record treatment with nusinersen in adults
Nusinersen (Spinraza®) is approved for the treatment of 5q-associated spinal muscular atrophy (SMA). For infants and children, nusinersen can halt the progression of the disease and improve muscle function. For adults, no systematic data on treatment with nusinersen are available to date. Scientific treatment documentation is therefore necessary to improve the data situation for adults…

New software for the remedies module goes live
The remedies module that has been running on our internet platform since 2011 has been revised both technically and in terms of content. In terms of content, we have given the new remedies module some modified functions and new overviews. Technically, the new remedies module has been developed using responsive technology so that the content…
National Action Plan of the National Action Alliance for People with Rare Diseases (NAMSE) recommends AmbulanzPartner as a telemedicine service for rare diseases
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…



