On the occasion of International Rare Disease Day, the Rare Diseases Center of HUG unveils its new website: https://www.hug.ch/centre-maladies-rares
More than 7,000 rare diseases, 580,000 people affected in Switzerland, and yet 95% of them still have no specific treatment. For many individuals, this results in a long and complex journey, marked by years of uncertainty before obtaining a diagnosis.
It is precisely in response to these challenges that the Rare Diseases Center (CMR) of HUG exists: to inform, guide and facilitate access to care for patients of all ages.
The new website now reflects this mission more clearly by distinguishing two pathways:
• people without a diagnosis, for whom a rare disease is suspected and whose main challenge is reducing diagnostic delay
• people with a diagnosis, who are directed towards reference centers, specialized consultations or other resources
The website is intended for everyone: patients, relatives, healthcare professionals, researchers, students and associations.
The CMR, led by Dr Loredana D’Amato at HUG, was recognized in 2020 as one of the nine Swiss rare disease centers by the National Coordination of Rare Diseases (kosek).