A tri-national network diagnosing and improving quality of life of patients with rare diseases

RARENET is a French-German-Swiss cross-border cooperative project. His first objective is to improve the management and health of patients with complex rare diseases. Bringing together reference centres for rare diseases, universities, research centres, and patient support groups, RARENET offers a platform for the education and interaction by directly linking clinical treatment to the needs of patients. It provides resources such as patient information sheets, seminars, and training sessions for a greater level of information for health professionals and the general public.
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Oro-dental rare diseases and rare autoimmune diseases

In Europe a disease is defined as rare when it affects fewer than 1 in 2,000 people, however in total several million people are affected by rare diseases. The RARENET network brings together researchers, heath professionals, and patient support groups. Together RARENET concentrates on two types of diseases: rare diseases causing oro-dental anomalies (alterations in the number, shape, size, structure, eruption, and/or resorption of teeth) and auto-immune diseases including lupus (frequently affecting young women) or vasculitis, an inflammation of blood vessel walls.
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Recent news

5 03, 2018

Rare Disease Day 2018

The 11th edition of Rare Disease Day was taking place on February 28, 2018. On this occasion, RARENET, SENSGENE and their partners were animating an information stand in the commercial centre Rivetoile in Strasbourg. The program included: painting one’s face with the colours of the day, a quiz [...]

7 02, 2018

Café-débat: « Rare : maladies et science »

Virginie Haushalter is a post-doctorate researcher at the Laboratory of Medical Genetics (LGM) of the University of Strasbourg (UMR S_1112) and works on the biological samples collected as part of the RARENET project. On Tuesday, 13th of February, she will be giving a presentation on rare diseases, RARENET and [...]

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