One month to Rare Disease Day

With Rare Disease Day 2023 taking place on 28 February and nearly one month away, we outline some of the key activities and events that our rare disease advocates and the international community can participate in to show our support!

Since its launch, Rare Disease Day (RDD) has played a critical part in building a diverse, global and multi-disease community, united by the purpose of advocating for the 300 million people worldwide living with a rare disease. FH Europe community has been actively involved in supporting and advocating for people with rare inherited lipid conditions for several years and in the past three years, the RDD served as an important opportunity to raise awareness about rare inherited high cholesterol- the homozygous FH. This year, as we welcome FCS advocates to our Network, the intention is to find synergies among rare familial lipid conditions on one hand and to help improve knowledge about rare diseases, challenges and opportunities in general.
Various events celebrating the day will be taking place on each and every continent both leading up to and on 28 February – not least EURORDIS’ Black Pearl Awards taking place on 21 February!

How to get involved in Rare Disease Day 2023?

As a proud member of EURORDIS we are pleased to disseminate different materials prepared especially for this occasion.

• Go to the Rare Diseases Day website and visit the resources section.
• Download visuals, get a photo frame or share your story and specific activities you plan to host or projects you work on so we can amplify your voice!
• Register to attend online the EURORDIS Black Pearl Awards ceremony either in-person in Brussels or online on 21st February 2023 
• Visit our respective pages dedicated to HoFH and FCS to learn about inherited rare lipid conditions

Did you know, that FH Europe nominated Thanos Pallidis for the Black Pearl Awards in 2021 . Thanos, an HoFH Patient Ambassador from Greece was one of three finalists. It was the first time in the history of the Black Pearl Awards that the HoFH community was represented. The awareness campaign brought several Ambassadors from around the world who supported Thanos and helped spread the word about rare FH.

— Read more here.

In the run up to the RDD 2023, FH Europe will be present and represented at:

• Europe Rare Disease Summit 2023 on February 15 in Madrid
• Black Pearl Awards 2023 on February 21 in Brussels
• 35th ERTC (EURORDIS Round Table of Companies) Workshop, titled Bringing Clinical Trials into the Future on February 22 in Brussels

We will be updating this webpage with more information, so make sure to visit regularly!