FH Europe – Review of the Year

As the year draws to an end, we are entering the festive season. Before we start considering resolutions for the New Year, we are delighted and proud to share with you some of our achievements over the past year. Read the message from FH Europe’s President, John Reeve. 

“In 2019 FH Europe embarked on a journey towards universal paediatric screening for familial hypercholesterolaemia (FH), and we have continued to create awareness and advocate for policy change to support this. Building on the success of last year’s Technical Meeting under the Slovenian presidency of the EU, in collaboration with Diagnoza FH, we held a high-level meeting in the Czech Senate: Moving Prevention from Evidence to Action: Overcoming the Barriers to Implementation. This resulted in the Prague Declaration on FH screening. Amongst our many prestigious speaking engagements I am particularly pleased that our community was represented at the World Heart Summit 2022 in Geneva.

We continue to grow and to broaden the scope of FH Europe towards covering all inherited lipid conditions. This year we spoke at the European Atherosclerosis FH Study Collaboration (EAS FHSC) Steering Committee, the WHF session of the EAS Congress in Milan and our Ambassadors living with Lp(a) spoke at its Paediatric Symposium. We also published a support brochure for people living with elevated Lp(a) and held three advisory boards with patient experts on HoFH and Lp(a). We welcomed three new members of the Network – The Lithuanian Heart Association (LHA), EcoSerce from Poland and only days ago the UK Charity Action FCS, reaching 30 members. And as of November, we have a new digital education partner – MEDizzy.

Building and strengthening the network remains a priority. We held the first annual face-to-face meeting in Lisbon on the 5th and 6th November, Building the Future Together. It was a great success, with over 40 delegates. The first day saw patients at the forefront with five international Ambassadors sharing their stories of living with FH, HoFH, elevated Lp(a) and FCS. Among special speakers who sent their messages of support we heard Prof. Fausto Pinot, President of the World Heart Federation, Maria da Graça Carvalho, Member of the European Parliament, Co-Chair of the MEP Heart Group and Dr Ricardo Baptista Leite, MD, MP, Founder and President of ‘UNITE – Parliamentarians Network for Global Health’. Together with guest speakers on stage we covered critical aspects related to advocacy and policy, data and research. Day two was about our network and plans for the future, including our planned move to the Netherlands to give better access to European institutions and funding. We also formally launched the Ambassador Programme in collaboration with the European Atherosclerosis Society.

But our Ambassadors had already been busy. In the run up to the annual meeting, they moderated and spoke at seven open and free webinars we prepared for community. As well as the EAS Congress mentioned above, one of our Young Ambassadors participated in an EU Parliament meeting in Brussels: Taking the Pulse: A cardiovascular Health Plan for Europe.

Throughout the year we continued close collaboration with the European Alliance for Cardiovascular Health (EACH) , including the launch of the EACH Plan for Cardiovascular Health.

We launched a survey on Women and FH in collaboration with Erasmus University Medical Center, Stichting LEEFH (both from the Netherlands) and the University of Oslo. Now available in 16 languages to help dissemination and support research.

On a practical note, we responded to the crisis in Ukraine by hosting a dedicating webinar and the supporting Ukrainian patients with delivery of medicines, working with local medical experts to identify HoFH patients. We collaborated with EFPIA Patient Think Tank, Poland based patient support organizations, an international diabetes and skin health communities to organise deliveries of insulin to Zaporizhia in the first weeks of the war and multiple supplies of skin care and wound care products.

Our list of publications continues to grow. During 2022 we produced:

• ‘How should public health recommendations address Lp(a) measurement, a causative risk factor for cardiovascular disease (CVD)?’
• ‘Screening in children for familial hypercholesterolaemia: start now’
• ‘Paediatric familial hypercholesterolaemia screening in Europe: public policy background and recommendations’
• The Time is Now: Achieving FH Paediatric Screening Across Europe, the Prague Declaration

We also contributed to the major policy document on cholesterol – the World Heart Federation Roadmap for Cholesterol 2022 Update; and co-authored a publication related to the patient support tool FindMyLipidClinic.com: A global Directory of lipid clinics and patient organisations to improve dyslipidemia care.

Many people and organizations contributed to these achievements, and on behalf of the Board of FH Europe I would like to give special thanks to the members of our network, the volunteer members of our Scientific and Policy Committees, our Ambassadors, our inspiring and tireless Chief Executive and her team, partner organizations,  and finally our donors and sponsors for the year: Amgen, Amryt Pharmaceuticals, Beren Therapeutics, Novartis, Silence Therapeutics, Ultragenyx and the European Atherosclerosis Society. Without their support none of this would be possible.

I would also like give a personal thank you to our volunteer Trustees for their support during the year in creating the environment where all this is possible.

It remains to wish you all the very best for a peaceful and relaxing holiday and a safe and productive 2023.”