Rare disease day campaign 2020
Raising awareness of homozygous Familial Hypercholesterolaemia (HoFH) and Familial Chylomicronemia Syndrome (FCS)
Saturday, 29 February, was the 13th edition of Rare Disease Day. The campaign continues to grow each year since it was first launched in 2008 by EURORDIS. Thousands of events were organised over 100 countries and regions to mark the occasion. The community joined together across borders and across diseases to show that Rare is many. Rare is strong. Rare is proud!
At FH Europe, we did too take part in the campaign to raising awareness of two rare conditions we advocate for, HoFH and FCS (Familial Chylomicronemia Syndrome). It also offered an opportunity to help understand the difference between a common form of Familial Hypercholesterolaemia – the heterozygous FH and a rare one – the homozygous FH.
Throughout the whole month of February, we shared on our social media content prepared by our international patient Network. Every day, for 29 days, short movies, personal video blogs, scientific articles and infographics were posted by FH Europe on variety of topics, helping anyone understand the two rare and devastating in consequences genetic conditions. In solidarity with the rare diseases’ community, our national patient organizations from across Europe, prepared beautiful images from their countries, which we shared on the final day.
To find out more about homozygous Familial Hypercholesterolaemia and Familial Chylomicronemia Syndrome please explore our website and visit our social media channels YouTube, Facebook, Twitter, LinkedIn. To learn more about the Rare Disease Day campaign visit https://www.rarediseaseday.org
FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt