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. Its 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
RARENET and the European Society of Human Genetics
18 June 2018, Milan, Italy. During the annual European Human Genetics Conference, Pr. Agnès Bloch-Zupan from RARENET gave a presentation about GenoDENT. Click on the link to see the video on YouTube (in English).
Looking Back on International Rare Disease Day 2019
On February 28, 2019, we celebrated the 12th annual International Rare Disease Day at the shopping mall Rivetoile in Strasbourg. It was a day full of information, sharing and fun! Check it out for yourself:
Photo Booth:
www.giforama.fr/rarediseaseday
Alsace 20 ( starting at 6:24)
https://www.alsace20.tv/VOD/Actu/JT/Jeudi-28-fevrier-Votre-JT-tout-en-images-1DwTpVTbag.html
YouTube