The Lisbon meeting – FH Europe meeting after 3 years

The 2022 FH Europe’s Annual Network Meeting is now officially dubbed the Lisbon meeting.

The long-anticipated event took place in the spirit of incredible energy and enthusiasm among participants. What made the meeting so special? It was a combination of very strong content, world-class speakers and participants, a unique location and a highly original social programme. Also, the ability to meet face to face for the first time in 3 years was a major success factor. And let’s not forget the specific webinars which took place in the lead-up to the annual meeting. The event was open to the public which helped improve health literacy among patients and clinicians regarding different lipid conditions.

Location

The milestone event took place in Lisbon, Portugal, 5-6 November and was co-hosted by Professor Mafalda Bourbon, a renowned Portuguese geneticist and a scientific advisor to FH Europe. The meeting was held in her institute – the National Institute of Health Doctor Ricardo Jorge.

A hybrid event

A blend of in-person and online participation with simultaneous translations into French and Polish made it possible for almost 70 delegates to join, which was a record number in the organization’s history. The event brought together patient organizations’ leaders, individual patients and advocates, scientists, clinicians, policymakers, politicians and industry partners. Together they represented 25 countries, including the USA and Lebanon.

It is all about people

From the very beginning to the very end, the event was planned to maximize the visibility and engagement of patients and patient ambassadors.

After the official opening ceremony, the stage was set by 5 incredibly smart and dedicated patient Ambassadors.  Indy Bangma and Danique van den Bogert (the Netherlands), J-P Corry (UK), Cristian Stefanescu (Italy) and Jill Prawer from Action FCS (UK) shared their very personal and touching, yet very informative and impactful stories of living with FH, HoFH, elevated Lp(a) and – for the first time – FCS.  

The official part ended with a surprise magic show leaving the audience smiling and excited … with lovely gift bags containing a special I am 🤍 Ambassador hoodie. The performance was delivered by Cristian, who hours earlier left many deeply moved and even in tears after sharing his story of life with undiagnosed HoFH.

Special guest speakers

The meeting welcomed some very special, globally renowned, guests from Portugal and other countries who contributed to the event. Prof. Fausto Pinto, President of the World Heart Federation, set the scene for the political session. As a very good friend to the FH Europe community, he has been very supportive of the patient community and worked over the last few years with the WHF to support the efforts for the implementation of the FH Paediatric screening. MEP Maria Carvalho da Garca, Co-Chair of the MEP Heart Group in the European Parliament, expressed her continued support for early FH screening and congratulated the recent achievements under the Czech EU Presidency. She concluded with an open invitation to host an event in Brussels in the spring. Dr Ricardo Baptista Leita, Member of Portuguese Parliament and Head of Public Health at the Institute of Health Sciences and Founder and President of UNITE, also spoke about his passion for patients’ and citizens’ rights and their role in ensuring people-centred prevention strategies, recognizing the urgency to act against CVD.

You can watch the recordings of the special interventions below:

Penilla Gunther, Former Member of Swedish Parliament, Founder of FOKUS Patient and President of the European Patient Safety Foundation (EUPSF) and Mission Board Member for Cancer Commission, also spoke at the political session. She also organized a dedicated workshop where she shared her experience as a politician, a transplant patient and a committed patient advocate.

Preventing the preventable – the political aspect

The meeting continued with a policy debate Preventing the preventable with panellists representing multi-stakeholder perspectives – patient, clinician, researcher, advocate, innovator and politician. Of course, the focus is on FH Europe’s journey towards systematic FH Paediatric Screening. The participants heard from Prof. Mafalda Bourbon and Penilla Gunther, as well as Zsofia Bakonyi, Engagement Lead, UCB and a former Lead of the EFPIA Patient Think Tank, FH patient living in Belgium;  Dr Marius Geanta FH Europe’s Trustee and Chair of the Policy Advisory Committee, President and Co-Founder of Centre for Innovation in Medicine in Romania; Prof. Urh Groselj – paediatrician and a researcher dedicated to FH paediatric screening from the Dept. of Endocrinology, Diabetes & Metabolic Diseases, University Children’s Hospital, University Medical Centre Ljubljana, Slovenia; and Kanika S. Dharmayat – representing EAS FH Studies Collaboration, conducting research at Imperial Centre for Cardiovascular Disease Prevention, Department of Primary Care and Public Health, Imperial College London, UK.

Workshops with concrete examples

A dedicated workshop provided an opportunity for FH Ambassadors and Allies to review key developments including the high-level technical meeting under the Slovenian EU Presidency in October 2021 and the Senate meeting in September 2022 under the Czech EU Presidency which led to the endorsement by many pollical and key opinion leaders for the Prague Declaration – a blueprint for making FH Paediatric Screening a reality in every country. It is hoped that the meeting in Lisbon will inspire new commitment towards achieving this in Portugal as well.

Another important aspect of the meeting was the strengthening of FH Europe as a network, building on the achievements of the last three years, during which significant progress was achieved despite the COVID pandemic. FH Europe’s main asset is its people – ambassadors from all walks of life willing to fight for the rights of patients and citizens living with lipid conditions. The Lisbon meeting brought together several inherited lipid communities – FH, HoFH, LP(a), and FCS – and saw them work together on developing further the FH Europe Ambassador Programme by providing support, tools and inspiration to Ambassadors of all ages and all nationalities.  As an inspiration, a global campaign on ASCVD – Invisible Nation – was presented by Neil Johnson, from the Global Heart Hub. Another example was the World Heart Federation Cholesterol  Advocacy Toolkit, which was presented by another guest participant Yunshu Wang, Policy and Advocacy Office at WHF.

Cooking your own dinner with a celebrity

With the official part over, the community building continued at the live dinner cooking workshop. It was undoubtedly one of the highlights of the event! Hosted by a Portuguese celebrity chef Catia Goarmon Palma, with a show of her own on the national cooking channel, the evening encouraged everyone to unwind, have fun and network. Having the opportunity to learn healthy cooking from a professional was inspiring and at the same time brought the wider community together!

The future of the Network

The second day of the event was dedicated to discussiing the future of FH Europe as a Network. Topics covered related to the governance, organizational structure and funding, including the aspiration to apply for EU-sponsored projects, were discussed as well as a planned move to the Netherlands. Hot topics which sparked excitement in the community were related to the engagement of the Network future actions, cocreation and the importance of Ambassador representation in various aspects of the community’s work. A warm welcome of a new member to the Network was another positive aspect of the event. EcoSerce from Poland officially joined FH Europe as its 30th member, becoming the second organization from Poland.

Democratizing the knowledge

It is significant to note that this year, to reach as many individuals as possible, lipid specific webinars were part of the annual meeting, delivered through Zoom webinars, and open to public. Out of 4 online events, 3 took place in October with almost 450 participants. Those were recorded and can now be accessed on demand on FH Europe’s YouTube channel. 

After the event 

While the post-meeting evaluation survey closes at the end of November, the preliminary results show that 90% of respondents found the meeting very good or excellent, with strong learning outcomes and an important direction for engagement in both FH Europe’s Ambassador Programme and FH Europe’s wider activities in 2023.

While the post-event report is being finalized, capturing the actions and the event statistics, one important illustration of the success of the meeting is available now. We’re talking about the PHOTOS!

Thank You

A big thank you to ALL speakers, who so generously contributed during the webinars and at the in-person event.

Kudos to the volunteers, who relentlessly supported the event in person in Lisbon as well as in preparation to the meeting. 

A big thank you to the supporters. FH Europe would like to recognize and to thank its donors and industry sponsors. The FH Europe Annual meeting 2022 in Lisbon was made possible thanks to the grant from the European Atherosclerosis Society and sponsorships from Amryt Pharma, Beren Therapeutics, Novartis, Silence Therapeutics, Ultragenyx. And last but not least, we thank the host of the meeting, Prof. Mafalda Bourbon who allowed us to use the remarkable venue for this event and the kind support of her colleagues throughout the event.