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Category: SMA
Bold ideas for the joint design of assistive technology provision
We would like to thank you for attending the Outpatient Partner Conference for Assistive Technology Providers on November 15, 2019. It was a very interesting conference where we developed ideas together on how we can implement better care for the patients in our network. Here are some impressions of the conference. We will keep you…
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…
Pilot phase of the Ambulanzpartner care research seal completed
The pilot phase, in which the APST seal was tested on selected care partner websites, began at the start of 2017. The pilot phase showed us that the seal was stable and how often it was clicked on. Our healthcare research seal identifies companies, practices and individuals who participate in research with their patient care…
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…