Rare Disease Day HoFH webinar

Feb 7, 2022

Like every year in February we look forward to celebrating the Rare Disease Day which always falls on the last day of the month. This year FH Europe will host a multi-perspective discussion dedicated to severe and rare form of inherited high cholesterol – the homozygous familial hypercholesterolaemia, in short HoFH. Together with international speakers, we will discuss the need to build on the recent scientific learnings to positively influence the national and the European health policies and the role of patients’ organizations in order to improve lives of people living with HoFH. The virtual event will take place on Monday, 28th February at 6pm CET (Zurich time).

On the panel, moderated by Magdalena Daccord, Chief Executive of FH Europe, we will welcome:

  • Thanos Pallidis (LDL Greece) and Michelle Watts (Avery’s Fight, USA), will bring patient and caregiver perspectives,
  • Prof. Kausik Ray (President of European Atherosclerosis Society, Lead of the Global FH Registry EAS FHSC, UK), who co-authored Worldwide experience of homozygous familial hypercholesterolaemia: retrospective cohort study published in The Lancet on 28th January,
  • Nicola Bedlington, (Senior Policy Advisor to FH Europe, past General Secretary of the European Patients’ Forum, Austria)

This event comes at a very exciting time, when our Network, the patients’ and the patient advocates’ community in collaboration with scientists, clinicians, and policymakers successfully delivered a High-level Technical Meeting on FH child screening in October and more data was published in December and in January. This includes the findings published in the Lancet based on the data from the HoFH International Clinical Collaboration (HICC) registry. You can find our more here

In order to reach as many interested people as possible the webinar be livestreamed on Facebook. To be able to benefit from simultaneous translation into German, Italian and French, it is however recommended to connect through Zoom. Register here: https://bit.ly/FHRareDisease22

After the event the recordings will be available on demand on FH Europe’s YouTube channel

This special event is brought to you in partnership with the European Atherosclerosis Society.


FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is registered as a charity; Charity number 1170731, registered in England and Wales.

FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt
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