FH Europe Heart Beat News – May 2021
Welcome to FH Europe’s very first edition of Heart Beat, a monthly newsletter from the European patient community sharing updates from the network, events, patient support information, clinical research news, and industry updates.
This month we reflect upon FH Europe’s series of webinars on Women’s heart health, celebrate ten years of Cholco eV in Germany, and share the latest reports and news from our partners in Sweden and Portugal.
Women’s Stories of FH and CVD
Each year, International Women’s Day is celebrated to recognise the achievements of women while calling for greater gender equality. This year’s theme for International Women’s Day has been “Choose to Challenge” and we chose to challenge common heart health beliefs and share some of the realities of female heart health that are seldom addressed.
Women are still being left behind when it comes to heart disease. Coronary heart disease is still seen as a “man’s illness”, however in the US, 1 in 4 women die from heart disease, and in Europe, cardiovascular disease kills 51% of women compared to breast cancer which causes 3% of deaths.
Watch FH Europe’s Webinars, Familial Hypercholesterolemia – an unfamiliar women’s issue and Cardiovascular Disease – an overlooked women’s issue to learn more about the most prevalent killer of females and how to protect and prevent heart disease in women of all ages.
Learn more about our “Choose to Challenge” campaign here.
FH Europe is officially a member of the European Patients Forum
The European Patients’ Forum (EPF) is an independent non-profit, non-governmental umbrella organisation of 77 patient organisations across Europe and disease-areas. FH Europe became a member of the EPF on the eve of the European Patients’ Rights day in April.
“We are delighted to be part of the most influential European patient advocacy organisation. Our membership means that we will have access to the latest information on health policies, funds and projects shaping in Europe. We will be able to learn how to better and more effectively serve our members – you, and the wider patient community” says Magdalena Daccord, Chief Executive of FH Europe.
We are proud to be part of Europe’s strongest collective patients’ voice promoting public health issues surrounding equitable access, affordability and quality of healthcare at EU level.
Registration for EPF Congress is now open!
Join us this October (26 – 29) for what promises to be a valuable and insightful experience with high-powered learning sessions and impactful keynote presentations, providing an exceptional opportunity for dialogue and engagement with a wide range of health players who aspire to showcase patient-led innovation.
#EPFCongress2021 is the only patient-led congress and will include a wide audience of patient representatives, policy makers, health systems experts, healthcare profession representatives, academics, regulatory and HTA experts, health insurance providers and industry representatives, from Europe and beyond.
EAS Congress 2021: FH Europe contributes in round table discussion
The European Atherosclerotic Society (EAS) is holding its 89th annual congress virtually this year – live-streaming from Helsinki, Finland. At EAS Congress 2021 (May 30 – June 02), attendees will explore the latest developments in research into the causes of atherosclerosis and related vascular disease and how these may affect the clinical guidelines for diagnosis and treatment. With many world-leading experts already confirmed, the EAS 2021 scientific programme will offer a bench-to-bedside overview of the latest current research in the field.
FH Europe will be participating in the following sessions during EAS Congress 2021:
- 4th EAS Pediatric FH Symposium – Saturday, May 29th. Renowned speakers discuss Prevention, management, and identification of cardiovascular disease in children. Speakers include; Jules Payne (HEART UK), Jeanine Roeters van Lennep (Holland), Mafalda Bourbon (Portugal), Albert Wiegman (Holland), Urh Groselj (Slovenia), Tomas Freiberger (Czech Rep). Free registration here.
- EAS FHSC Steering Committee Closed Virtual Meeting – Sunday, May 30th. This is an annual meeting of all the Principal Investigators of the Global FH Registry, where FH Europe will share the Networks most recent projects and achievements. (Invitation only)
- WHF/FH Europe/EAS round table discussion: Next steps after the global call to action – Tuesday 1st June, 15:30-16:30. This very special debate will bring together the international key stakeholders updating on the progress made since the launch of the Global CAll to Action on FH.
As part of FH Europe’s efforts to facilitate and improve health literacy among patients and the public, we have offered 5 complimentary registrations for the conference to the Network members (ParSirdi.lv from Latvia, SZÍVSN from Hungary, FOBAC from Romania, HEART UK) .
FH Portugal: Prevention and protection against Covid-19
FH Portugal participated in a Task Force webinar on the vaccination plan against COVID-19 alongside 66 patient associations. Read the full report on the pathologies that determine that priority is given to taking vaccines in the region.
Read more here
Catch up on FH Portugal’s recent news update covering vaccination guidelines and COVID-19 safety measures and the significant “Declaration of Porto” detailing the need for more sustainable and innovative health and wellbeing in the region.
Read more here
Celebrating 10 Years of CholCo EV
On 20 February, the German patient organization, CholCo EV celebrated 10 successful years supporting and advocating for patients with familial hypercholesterolemia or other severe genetic disorders of lipid metabolism. Ten years ago, Seven FH affected individuals from Germany and Austria laid the foundations for the now steadily growing FH organisation, one of these founders, Michaela Wolf, CEO of CholCo eV says “Since my family and I are affected (by FH), I wanted to ensure that other families get information and access to experts to reach a diagnosis faster than we were able to. When I see how far we have come with CholCo in the past ten years and how many people we are already supporting with information, contacts to experts and new courage, I am very happy.”
As this year is not like any other, CholCo EV will celebrate in style when restrictions ease, treating lucky competition winners to rewards such as culinary courses.
Read more here
Changes to the FH Europe Board of Trustees
Our Chair, Giovanni Nisato, has notified the Board that he needs to reduce his time commitment to FH Europe so that he can put more time into building his business, and is therefore standing down as Chair. We are pleased to announce that John Reeve, our Treasurer since 2019, has agreed to step in as interim Chair with immediate effect. John has long experience as a trustee of various charities and was a senior consulting partner with Deloitte for 25 years. During that time he was the technology consulting lead for Europe, Middle East and Africa and led projects in many countries around the world. We are delighted to add that Giovanni will continue as a valued trustee. John and the Board thank Giovanni for his contribution to building the new FH Europe and look forward to working with him in the future.
Praluent® ban lifted in Germany
The ban on the production, marketing, distribution and sale of Sanofi’s and Regeneron’s PCSK9 inhibitor Praluent®, which was imposed on 11 July 2019 for Germany, has been lifted and has been available again since April.
*submitted from CholCo Ev
Innovative screening for FH receives funding
FHabian is a web-based platform for cascade screening of populations at risk for FH. FHabian enables a diagnosed FH patient to easily invite all relatives to be screened for the disease.
When the model can be used in full scale, Jonas Brinck, chief physician at Karolinska University Hospital believes that over a three-year period it will be possible to find and diagnose half of all those who have FH in the Stockholm Region. The hope is to spread the method to more hospitals and regions to reach more of the estimated 33,000 people in Sweden who live with a risk of cardiovascular events early in life.
FHabian is the result of a collaboration between Amgen, Health Solutions and a team at Karolinska University Hospital.
*submitted from FH Sverige
FH Sweden launches the Cholesterol Pod
The Cholesterol Pod is, according to the association, a podcast with the ambition to increase knowledge about cholesterol in general and hereditary high cholesterol in particular through conversations and discussions with researchers, healthcare professionals, decision-makers and patients. FH Sweden produces the podcast in collaboration with Amgen.
FH Europe is supported by an educational grant from Amgen Limited, Sanofi, Regeneron, Akcea Therapeutics Inc. and Amryt