The 14th edition of the International Rare Disease Day, coordinated in France by the Rare Disease Alliance will take place on Sunday, February 28th. This year, in the context of the COVID-19 epidemic, the Alliance is organizing a campaign to raise awareness of rare diseases #YESWENAME on social networks, in partnership with the Liryc Institute and the Reference Center for Hereditary Rhythmic Diseases (Centre de Référence des Maladies Rythmiques Héréditaires - CRMRH).
The social networks campaign will take place from February 6 to 28. The objective is to highlight rare diseases and their impact on the lives of those affected for the general public and decision-makers.
The Reference Center for Rare Diseases (CRMRH) of Bordeaux University Hospital takes care of 750 patients each year with hereditary rhythmic diseases (Brugada Syndrome, long QT, arrhythmogenic dysplasia of the right ventricle, catecholergic TV, laminopathy etc.) as well as patients at risk of sudden cardiac death.
The stakes are high. Obtaining a precise diagnosis is a first step in medical and social care. In this context, the importance of properly performed family screening is a strong message to be relayed.
This day is also an opportunity to remind people that rhythmic diseases should not be a fatality, and that several detection and treatment options exist. Thus, the Reference Center for Hereditary Rhythmic Diseases together with the Liryc Institute develops diagnostic and therapeutic innovations.
More information on the Reference Centre.