Home » 17th Rare Disease Day on February 29, 2024

17th Rare Disease Day on February 29, 2024

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17th Rare Disease Day on February 29, 2024

The Federal Ministry of Health has been working for years to continually improve the health situation of people with rare diseases. On the initiative of the BMG, the BMBF and the Alliance for Chronic Rare Diseases (ACHSE), the National Action Alliance for People with Rare Diseases – NAMSE for short – was launched in 2010. A total of 29 alliance partners are working together to improve the health situation of all people with rare diseases. Concrete measures have been developed for this purpose and most of them have already been implemented.

In addition, the BMG is also committed to providing highly specialized care for people with rare diseases in the European context.

The European Reference Networks (ERN) have been established within the EU since 2017. In these networks, experts come together for mutual exchange and cooperation. Over 200 healthcare facilities in Germany are involved in one of the 24 ERNs. These ERNs now need to be integrated into the national health systems. In this context, Germany is participating with a national consortium in the EU initiative for the “Integration of the European Reference Networks into the National Health Systems – JARDIN. In addition to Germany, all other EU member states as well as Ukraine, Norway and Switzerland are involved here. Around 60 institutes, clinics and health ministries from all over Europe are involved under the overall coordination of Austria. The aim is to improve care for people with a rare disease in Europe across borders.

In addition to telemedicine applications, recommendations for national care pathways with interfaces to the ERNs as well as structures and procedures for undiagnosed patients are to be developed.

The multidisciplinary consortium with which Germany is involved in JARDIN includes, in addition to the Federal Ministry of Health as consortium management, the NAMSE office, the Federal Institute for Drugs and Medical Devices (BfArM), ACHSE and the centers for rare diseases at the university hospitals in Tübingen, Frankfurt/Main and Würzburg and Heidelberg.

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Advancing health care in such a special area as the care of people with rare diseases can only succeed if everyone pulls together and works together in a spirit of trust.

True to the motto of the day for rare diseases “Become colorful together!” Today, attention is focused on all people with rare diseases. Only together can we meet your special needs.

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