FH Europe Annual Network meeting – leveraging the new virtual normal

Nov 8, 2020

The highlight on the FH Europe patients’ community’s agenda is the annual meeting.

Since the creation of the Network, the leaders of the respective patient organizations have been coming together face to face to share, exchange and to network. In 2020, in collaboration with DIAGNOZA FH and the Czech Society for Atherosclerosis, the gather was planned to take place in Prague. However, due to the high-risk situation related to COVID19 pandemic the meeting has been moved to virtual. As a result, the Networks closed sessions took place on Saturday Nov 7. They were a mix of plenary presentations, guest presentations and breakout room discussions in small groups. There were in total 51 participant joining in the morning and 41 in the afternoon. The whole event was simulations translated into French and Italian. The new format allowed some of the longstanding members to actively participate in discussions for the first time – as the travel and language barriers were eliminated. So, despite missing out on some coffee breaks informal chats, the virtual “new normal” has been well received.

During the opening session the new Trustees of the Board introduced themselves and then facilitated the breakout sessions. Also 4 guest speakers were able to share about their organizations, Nataša Jan from the Slovenian Heart Foundation, Lucie Votavová and Tatjana Aleksicova from ScrenPro FH, and Zsofia Bakonyi from the EFPIA Patient Think Tank.

The new virtual meeting format offers an additional great benefit of opening the annual network meeting, together with its latest updates and education, to a wider international audience.

Next up:

  • Nov 18th – “Global FH Registry: a collaborative approach to better understand your inherited condition.” with Dr Antonio J. Vallejo-Vaz, Dr Alexander RM Lyons and Christopher Stevens. – To register: https://bit.ly/FHEuropeWebinar
  • Dec 2nd – latest updates from the European Atherosclerosis Society on treatment and novel therapies in genetic dyslipidemias, the ESC / EAS guidelines, and the lipid clinic project with Prof. Lale Tokgözoglu and Prof Alberico L. Catapano. – To register: https://bit.ly/FHEuropeWebinar2
  • Dec 16th – final topic to be confirmed

Moving on, FH Europe will scale up its awareness, education and advocacy activities with the use of social media platforms and technology to reach and engage general public about the inherited lipid conditions. So please share with your networks about FH Europe activities and presence on Facebook, Twitter, Instagram and LinkedIn.

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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