Leaving no one behind: Creating a better future together for all people living with rare and severe FH

Hosted by FH Europe

Online, United Kingdom

Description


In preparation to the Rare Disease Day 2022, we are pleased to invite you to a special webinar on Monday, Feb 28th from 6pm to 7pm CET. FH Europe will host a multi-perspective discussion dedicated to 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 the severe and rare  form of inherited high cholesterol – Familial Hypercholesterolaemia.

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 2 weeks ago in The Lancet;
  • 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.

For the benefit of our community we will host this event also with simultaneous translation into German, Italian and French and therefore recommend connecting through Zoom.

Register herehttps://bit.ly/FHRareDisease22 to join the live discussion. This event will also be livestreamed on Facebook –in English.

Event details

Online, United Kingdom