This year, the European Atherosclerosis Society’s annual congress in Lyon, France, presented a wealth of opportunities for the FH Europe Foundation and Patient Ambassadors. The event allowed us to immerse ourselves in the scientific congress, learn, share, advocate, and network. Our collaboration with the medical community has grown over the years, and it was heartening to see an increased interest in the patient perspective at the event.
A day before the main congress, our Patient Ambassadors - Jill Prawer, Danique van den Bogert, and Cindy Evans - took center stage at the 7th EAS Paediatric FH Symposium! They shared their personal experiences of living with FCS, HeFH, and HoFH, respectively. From childhood diagnoses and daily challenges to participation in clinical trials, psychological burdens, and recent advocacy efforts, they covered it all.
Sharing personal details with a room full of strangers is emotionally challenging. Yet, each ambassador delivered a powerful narrative about their patient journeys, the burden of disease, and their hopes for the future. Their stories, unique as the individuals themselves, resonated with the audience, many of whom interact with patients in their daily practice. The patient ambassadors’ firsthand accounts added a human touch to the symposium, making it more informative and inspiring.
The participants’ feedback was overwhelmingly positive, appreciating the novel approach of including patient stories to complement scientific presentations. This approach underscores the importance of considering the patient as a whole.
Read more: https://eas-congress.com/2024/congress/paediatric-fh/
This year, the FH Europe Foundation was offered a dedicated booth space at the congress’ exhibition. After ensuring compliance with French law, our patient advocates were able to participate more meaningfully.
The booth’s strategic placement - next to our partner EAS FH Collaboration Studies team and opposite the Lp(a) testing station - was ideal. Free Lp(a) testing was offered to the congress participants, and those who tested were advised to visit our booth. There, they could meet with Patient Ambassadors, pick up patient leaflets on Lp(a), and learn more about managing the condition and preventing CVD while we await therapies.
The collaboration between the EAS and FHEF teams aimed to maximize visibility for the Patient Ambassadors, drive traffic to the booth, and enhance the experience for those undergoing the Lp(a) diagnostic journey. The booth turned into a hotspot for sharing, discovering, establishing new relations, meeting friends and partners, and initiating collaborations.
Our team engaged in an estimated 200 conversations, signed up newsletter recipients, disseminated information materials in several languages, and received inquiries from around the world. The booth was a brilliant engagement strategy!
PERFECTO stands for “Preventing thE PReventable – Familial HypErCholesterolaemia paediaTric screening for cardiOvascular health”. The EAS Congress in Lyon was the first public opportunity to promote PERFECTO among the leading scientific and medical community involved in FH detection and treatment.
On Sunday, May 26, Magdalena Daccord presented the project at the EAS FHSC Steering Committee meeting inviting the investigators to participate in a dedicated PERFECTO survey. Information about PERFECTO was also presented at the FH Europe’s booth during the whole congress with electronically displayed information and leaflets distributed to the visitors.
PERFECTO is a project co-funded by the European Union. Views and opinions expressed are however those of the authors only and do not necessarily reflect those of the European Union or HaDEA. Neither the European Union nor the granting authority can be held responsible for them.
To learn more about PERFECTO please visit: www.perfecto-fh.eu
The annual congress also offered an opportunity to present in side-meetings and to hold several project meetings, leveraging the physical presence of key stakeholders in Lyon.
On Sunday morning, FHEF’s CEO, Magdalena Daccord presented the EAS FHSC Steering Committee Meeting. In her presentation, she emphasised the importance as well as the benefits of the meaningful patient engagement in awareness raising, education, research and policy.
She also she spotlighted the patient organisations, individual patients, caregivers and patient Ambassadors:
PERFECTO, as an example of the EU grant funded project around precision medicine and FH paediatric screening was presented with a CALL TO ACTION. An invitation to participate in a survey prepared by EuroScan in collaboration with Prof. Urh Groselj, Prof. Albert Wiegman, and Prof. Tomas Freiberger.
The EAS congress offered an opportunity to bring together members of the Lp(a) International Taskforce (ITF), who also attend the congress. Since the last face to face meeting at the ESC 2023 in Amsterdam, the group has grown by gaining additional health tech/innovation/patient perspective and a new industry observer!
The 2 days meeting was rich in discussions around topics of education/awareness about Lp(a), health economics model for Lp(a) testing, living labs application, quality of life in people with high Lp(a) and societal impact. The participants provided focused update presentations on the situation in Europe in general, then zooming in on Austria, Romania, and them moving onto Asia with China and Japan in focus. Then the latest available data regarding Lp(a) tests and testing uptake per country per capita across the globe was presented. The group investigated the very important topic of definition of primary vs secondary prevention in the context of public health policy, medical guidelines, research projects, and public perception.
The group concluded with a set of specific actions for the next 6 months and the year 2025, including the plan to host a Global Lp(a) Summit and to kick of the health economics project.
Elevated Lp(a) is becoming a topic of increased interest among stakeholders in the space of cardiovascular disease and cardiovascular health, research and development, public health policies. 1 in 5 people have elevated levels of lipoprotein (a), which is an independent CVD risk factor. It is genetic, inherited from our parents. Yet, no genetic testing is needed. A simple blood test will suffice. That said, not everyone with elevated Lp(a) will automatically have serious heart issues. Lp(a) levels need to be assessed against the backdrop of coexisting health issues and risk factors, like LDL cholesterol, hypertension, diabetes, lifestyle, etc.
Lp(a) ITF Members: Prof. Florian Kronenberg, Magdalena Daccord, Nicola Bedlington, Dr Marius Geanta, Prof. Zanfina Ademi, Dr Jean-Luc Eiselé, Bogi Eliasen, Dr Zhenyue Chen, Prof. Mariko Harada-Shiba, Marc Rijken, Dr Tobias Silberzahn, Dr George Thanassoulis.
Lp(a) ITF Observers: Victoria Tzouma (Amgen ), Christian Thonke (Novartis), Dr Andrija Janicijevic (Roche).
To find out more about the Lp(a) International Taskforce please visit: https://fhef.org/lpa-international-taskforce/
PerMedFH is much-needed research, aiming to demystify the issue of genetics in Familial Hypercholesterolaemia (FH). The end goal of this multiyear project is to personalise diagnosis and treatment for people with FH for better health outcomes.
The project consortium members, led by Prof. Mafalda Bourbon and her Team from Instituto Nacional de Saúde Doutor Ricardo Jorge, met in Lyon, France ahead of the European Atherosclerosis Society annual congress.
Following the first 5 months updates and readjustments consortium meeting, the first big task is to produce patient education materials helping understand the importance of patient engagement in genetic research. Education, awareness, understanding, trust and consent are critical in samples’ collection and (data) sharing which will advance innovation.
FHEF is proud to be part of this important research and to contribute with patient perspective as well as to lead the information dissemination and education part.
Partners of the consortium include Gilles Lambert from INSERM Université de La Réunion Simon Pfisterer from University of Helsinki Prof Eric Sijbrands from Erasmus MC and us FH Europe Foundation with Magdalena Daccord and Cindy. The project is funded by Fundación ”la Caixa” .
A dedicated project website is coming soon.
As we reflect on the European Atherosclerosis Society’s annual congress, it’s evident that collaboration between patients, advocates, and the medical community is essential. Patient Ambassadors bravely shared their stories, bridging the gap between science and lived experience. The FH Europe Foundation’s booth became a hub of engagement, fostering connections and disseminating vital information. And projects like PERFECTO and PedMed FH highlight the power of precision medicine in FH screening and management.
Let’s continue to work together, shaping a future where cardiovascular health is prioritized, and familial hypercholesterolemia becomes preventable. Our collective efforts can make a lasting impact on patients’ lives worldwide.
Between 6–9 June 2024, millions of Europeans will go to the polls and their votes will shape the future of the Union. Members of the European Parliament (MEPs) make decisions that affect the daily lives of everyone, a considerable amount covering important healthcare issues that have a direct impact on patient organisations and patients' lives. The elections present a critical opportunity for the FH Europe Foundation community in the EU.
This is YOUR opportunity to use your vote and help prioritise public health in the EU!
Did you know that cardiovascular disease (CVD) is the number one killer in Europe, and beyond? In the EU, it accounts for 36% of all deaths and impacts the lives of some 60 million people. Yet, there is no dedicated EU plan in place to tackle CVD. Familial hyperlipidaemias (both forms of FH, elevated Lp(a) and FCS) are genetic, inherited conditions. If undetected and unmanaged, they lead to serious heart health consequences, especially FH and elevated Lp(a).
Among the familial hyperlipidaemias FH Europe Foundation (FHEF) advocates for, there are also 2 rare and severe disorders (HoFH and FCS). To date, the 30 million Europeans living with a rare disease in Europe still have high unmet needs in a wide range of areas, including accessing early and appropriate diagnosis, treatment and health and social care. Rare diseases are an area where EU action can have exceptional added value, as knowledge and data are scattered and scarce, and national action is limited.
For our community specifically, CVD prevention through early screening programmes and early detection of familial hyperlipidaemias (FH paediatric screening and Lp(a) level measurement) have been in focus.
In addition in the past weeks, FHEF also signed two petitions supporting the efforts around public health in the EU.
First of them was the EURORDIS-led #ActRare2024 pledge, which contains 8 strategic areas with the ultimate goal of addressing the high unmet needs of the rare diseases community.
The EPF manifesto has been translated into several languages and can be accessed as we as endorsed here.
But what are political parties saying about public health in their manifestos?
To answer this question, the European Public Health Alliance (EPHA) have critically assessed 5 EU parties' manifestos on health-related measures, across 16 key topics.
You can read the full analyses for each party manifesto (listed below) including a 2-page summary for each party on their webpage.
FHEF is calling on its members to take action and to support the above pledges. Use your vote and make health the European priority next term!