Community webinar – “Global FH Registry: ….”
Join us for a community webinar
Ever wondered what a #registry was? Curious to find out how FH registry can impact you and your family? #FamilialHypercholesterolemla (FH) is one of the most common and life-threatening inherited conditions. If you have FH, at least someone else in your #family also has FH. Individuals with FH remain vastly under-diagnosed and under-treated and are at an increased risk for heart disease and heart attacks at a very young age. However, FH is manageable with the right care.
A registry is a database; it is also a way to collect #research data on diagnosis, individuals’ experiences, disease patterns and trends, as well as gaps in care. Registries help researchers increase the knowledge of a certain disease, ultimately leading to further improvement in health outcomes.
The global FH registry run by the EAS-FH Studies Collaboration (FHSC) is a source of invaluable information on FH prevalence, geographical distribution, genetic variants associated with disease, clinical features, clinical management and patient outcomes. It is a hub critical in gathering new knowledge to inform best practice and care services for people born with #familialhypercholesteroleamia and their families. At FH Europe we are delighted to be official partners of EAS FHSC and to bring the most important information to the patients’ community as part of our FH Network Annual meeting 2020.
Join us in this special webinar “Global FH Registry: A collaborative approach to better understand your inherited condition” and find out what FH #Registry is, what the benefits of this global database are to the FH and HoFH #patientscommunity, and where the participating centers are located.
Get answers to your questions directly Dr Antonio J. Vallejo-Vaz, Dr Alexander RM Lyons and Christopher Stevens , the #EAS FHSC global registry coordinators from Imperial College London. To register use https://lnkd.in/dHBswzK
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FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt