Malformations et maladies vasculaires rares : parlons-en !
28 February 2020
CHUV-Rue du Bugnon 46, Lausanne, Suisse
Hosted by CHUV, Lausanne University Hospital
On the eve of World Rare Disease Day, the CHUV inaugurates its "Centre for Rare Vascular Diseases and Abnormalities" (CMVR), i.e. the organisation of a specialised consultation including experts from different fields (medicine, surgery, radiology, genetics, laboratory) around patients - children or adults - suffering from so-called "rare" pathologies, such as Marfan syndrome or vascular Ehlers-Danlos syndrome.
Indeed, if "only" 400 people are currently concerned by our centre, each of them deserves the best care, from diagnosis to specialised follow-up, with the highest degree of clinical expertise and adequate technical infrastructures. Due to the low prevalence of these diseases, a grouping of patients within the CMVR allows professionals to optimize the care of these people, while promoting training and research in this field. The CMVR is thus integrated into the national concept of rare diseases, acting as a centre of reference in this field, notably by setting up a register and monitoring indicators.
In order to shed light on these diseases, which are still little known and yet so debilitating for our patients, a symposium open to the general public is being organised.