FH Europe Foundation convened leading scientific and advocacy organisations working in inherited lipid disorders and atherosclerotic cardiovascular disease (ASCVD) to welcome the first-ever EU Screening Week, taking place from 28 September to 4 October 2026, and offer their collective support for its implementation across EU Member States.
At FHEF’s initiative, a joint letter was sent to the Cabinet of European Commissioner for Health and Animal Welfare Olivér Várhelyi on July 17th, 2026. The letter brings together FHEF, the European Atherosclerosis Society (EAS), the Lp(a) International Task Force and the EAS FH Studies Collaboration, reaffirming their shared commitment to supporting EU Screening Week and the wider implementation of the EU Safe Hearts Plan.
Connecting European policy with practical action
The letter reflects the importance of bringing patient, scientific, clinical and policy communities together around a common European framework for cardiovascular prevention, screening and early detection.
The document highlights the strong alignment between EU Screening Week and our organisations’ longstanding work. This includes the first EU Public Health Best Practice on paediatric screening for familial hypercholesterolaemia, accepted by the European Commission in 2020, as well as the EU-funded PERFECTO and FH-EARLY projects. It also builds on the recognition of familial hypercholesterolaemia (FH), elevated lipoprotein(a), or Lp(a), and inherited lipid disorders in general, within the EU Safe Hearts Plan.
EU Screening Week provides an important opportunity to connect several major moments for cardiovascular health: FH Awareness Day on 24 September, World Heart Day on 29 September, and wider European efforts to promote awareness and detection of cholesterol, elevated Lp(a), high triglycerides and other cardiovascular risk factors.
Mobilising a broad European community
By convening this collaboration, FHEF has helped bring together complementary patient, scientific, clinical, policy and implementation expertise:
Together, the partners have offered to mobilise national societies, clinicians, researchers, lipid clinics, patient organisations and patient ambassadors. Their proposed contribution includes supporting local screening activities, evidence-based communications, registry expertise, and policy and implementation efforts across EU Member States.
The letter also requests a meeting with Commissioner Várhelyi to discuss how this combined expertise and reach can contribute most effectively to EU Screening Week and help translate the Safe Hearts Plan into concrete benefits for individuals, families, communities and governments across Europe.
Read the joint letter in full here
All Partners look forward to working with the European Commission to make EU Screening Week a meaningful catalyst for earlier detection, more effective prevention and better cardiovascular health for all. At the time of publication, the partners are awaiting a response from the Commissioner’s Cabinet.
As FH Awareness Day approaches, the FH Europe Foundation community is connecting local action with a powerful policy moment for early detection and prevention.
Every minute, somewhere in the world, a child is born with familial hypercholesterolaemia (FH). Each birth is another opportunity for early detection and lifelong prevention, but only if health systems, professionals, families and communities know to look for FH.
That sense of urgency and possibility was at the heart of two FHEF community calls held in August. Convened to prepare for FH Awareness Day on 24 September, the calls became a lively global exchange of practical ideas, national progress, policy intelligence and mutual support.
Participants joined from across Europe and countries including China, Iraq and Thailand, while updates extended further into Africa and Asia. The message was clear: FH Awareness Day is not only a moment to explain what FH is. It is an opportunity to help people understand their risk, know what to do next and turn awareness into action.
This year’s campaign arrives against an important policy background in Europe. The EU Safe Hearts Plan recognises FH and inherited lipid disorders within Europe’s cardiovascular prevention agenda and places renewed emphasis on early detection.
The European Commission’s work on recommendations for cardiovascular health checks offers a further opportunity to ensure that cholesterol, family history and inherited risk are systematically considered.
The timing matters. FH causes elevated LDL cholesterol from birth. Identifying it only in midlife means losing years during which premature cardiovascular disease could have been prevented. The community’s call is therefore not simply for more screening, but for screening early enough to change lives.
The first-ever EU Screening Week, beginning on 28 September, adds a visible Europe-wide platform for prevention. Testing programmes, educational events, webinars, community outreach and communication campaigns can all contribute. Taking place shortly after FH Awareness Day and alongside World Heart Day, it creates a rare opportunity to connect inherited risk with the broader cardiovascular health agenda.
Progress in France towards systematic FH screening at age six, Austria’s new national lipid consensus, and paediatric screening developments in Luxembourg and Latvia demonstrate how sustained advocacy can translate into policy attention, stronger guidance and practical screening pathways.
One of the most valuable insights from the calls came from members reporting on a previous shared action: writing to national ministries of health about cardiovascular health checks and the inclusion of paediatric FH screening.
Responses have arrived from Ireland, Austria and the Netherlands, helping to reveal where persistent objections remain and which questions must still be addressed to convince policymakers.
A negative or disappointing response is not the end of advocacy. It confirms that the message has reached the decision-maker, exposes the arguments that must be challenged and provides a basis for coordinated follow-up.
By comparing responses across countries, members can identify common barriers, strengthen the evidence behind their asks and make the next approach harder to dismiss. A campaign letter therefore becomes more than a single communication: it opens an accountable policy conversation.
The calls revealed a remarkable range of activities already taking shape. Although countries are working with different health systems, resources and levels of public awareness, each is finding a practical way to advance the same goal.
The community also highlighted the FH Summit in Poland, Croatia’s RUN4FH and an in-person FH Connect event in Singapore. Work is underway to support the development of a patient organisation in South Africa.
These initiatives demonstrate that the movement is not defined by one format or geography. A screening day, policy workshop, scientific meeting, run, video, translation or patient story can all contribute to a shared effort.
Participants did more than report activities. They helped shape how the campaign should communicate.
Patient advocates and experts discussed how to balance hopeful messages with more emotive images showing the consequences of late diagnosis or lack of access. The discussion recognised that one approach will not work for every audience. Children and families may benefit from messages centred on the possibility of a long, healthy future, while adults may sometimes need a more direct reminder that untreated FH can lead to a heart attack at a young age.
This is why the campaign toolkit is designed to be adaptable and representative of different ages, backgrounds and communities. Members offered translation support, shared evidence about which visuals engage their audiences and suggested ways to make the materials more locally relevant.
The 2026 campaign is ultimately about empowerment. It will help people understand cholesterol screening, lipid profiles and laboratory results, cardiovascular and inherited risk, family history, FH management and evolving treatment options.
Personal stories will remain central. People living with FH are invited to share their photograph, age at diagnosis and reflections on why timely screening mattered—or what an earlier diagnosis could have changed. These experiences give policy asks a human face and help others recognise themselves and their families in the message.
What made the August calls powerful was not only the number of activities announced. It was the willingness to learn across borders: a policy response in one country becoming evidence for another; a successful visual inspiring a different audience; clinicians stepping forward where no patient organisation yet exists; and experienced advocates offering their reach to emerging communities.
FH Europe Foundation’s role is to help connect these efforts, make local work more visible and demonstrate to decision-makers that they are not isolated activities but part of a growing global movement.
This FH Awareness Day, our shared task is to make early detection impossible to overlook: know your cholesterol, know your family history, understand your results and act early. When communities connect awareness with evidence, policy and practical action, we do more than mark a date, we help prevent the preventable.
A short note before I begin: this is not intended as a promotion of Amgen or of the Summit. It is my personal reflection on four days of meetings, discussions and learning, viewed through the lens of a patient organisation working in cardiovascular health, inherited lipid disorders, early detection and prevention.
Amgen is one of FHEF’s industry partners, and I believe that makes it even more important to be clear about the value of these interactions, but also about the questions patient organisations should continue to ask.
For me, the 2026 Amgen Advocacy Summit in Thousand Oaks “Where insights meet impact” was strategically important because it created something that is still relatively unusual: sustained access to senior company leadership, scientists, medical, policy and advocacy teams, combined with a large and diverse group of patient organisations.
More than 130 US and international organisations were represented across cardiovascular disease, cancer, obesity, rare diseases, bone health, and inflammation. The formal Summit itself took place over two days, but for the cardiovascular community our programme effectively lasted four days.
A small group of leaders of international/non-USA patient organisations began the event 2 days ahead of the main meeting with a visit to Amgen’s campus and laboratories, moving around the large Thousand Oaks site by golf carts. For someone who spends most of her time at the policy and patient end of the healthcare journey, it was useful to see some of what sits behind the word “treatment”. Amgen is a biotechnology company involved across much of the medicine-development pathway: identifying and developing potential medicines, clinical development, establishing manufacturing processes, quality control, production and supply.
The visit helped make something very tangible: the journey from a promising molecule to a medicine that can reliably reach a patient is long, technical and dependent on many different disciplines and decisions. For patient advocates, that creates an obvious question. If science, clinical development, manufacturing, regulatory work, quality and access all need to be integrated throughout the process, why should patient involvement be treated differently?
My conclusion was simple: patient engagement should not be a consultation added towards the end. It should be an active involvement and an operational part of medicine development from the beginning.
Later that day, I recorded an interview focusing on FH, HoFH and elevated Lp(a), including early detection, the role of families, prevention, partnership and what meaningful progress should look like over the next five years. There was also a small but memorable reminder of why awareness matters. I met Eliot from the filming team again, whom I had met the previous year. He told me that our earlier conversation had prompted him to have his cholesterol checked—and he did.
We often discuss screening and prevention in population-level numbers. Sometimes impact begins with one conversation.
The second day began with a global discussion involving Amgen’s medical, market access and policy leadership. The conversations covered some difficult realities: where clinical research takes place, increasing evidence requirements, reimbursement and HTA, access delays, real-world evidence, and the tension between affordability and continued investment in innovation.
What I appreciated most was hearing senior leaders clearly acknowledge that patients and patient organisations need to play a much greater role in shaping these decisions. One phrase from the discussion was deliberately provocative: historically, patient advocacy could sometimes be treated as the “cute” part of the process—useful for a website, a moving story or an event, but peripheral to the decisions that really mattered. Patient advocates in the room strongly challenged that idea. Today, many patient organisations combine lived experience with research, policy expertise, health economics, registries, real-world evidence and implementation knowledge. In our own work at FHEF, this evolution has been very visible. The Q&A also became constructively uncomfortable. Advocates challenged why known barriers to women’s participation in cardiovascular clinical trials continue to exist. If the barriers are understood, representativeness should increasingly be designed into recruitment strategies rather than explained after a trial has finished. We also challenged the sustainability of patient engagement. If companies, regulators and HTA bodies increasingly expect highly skilled patient experts to contribute to research and decision-making, this cannot depend solely on occasional advisory boards or one-year projects. Long-term investment in patient-expert capacity and sustainable patient organisations is necessary if we genuinely want patients to participate as equal partners.
This discussion flowed naturally into the dedicated Global Cardiovascular Disease Policy Forum, where FHEF and the Lp(a) International Task Force (ITF) joined the World Heart Federation, Global Heart Hub, Mended Hearts Europe, EACH and the Asia-Pacific Cardiovascular Disease Alliance. Each organisation shared its priorities and achievements.
For me, this was an important opportunity to present what has happened in Europe over the past few years—including the EU Safe Hearts Plan and the successful work by FHEF, EACH, and partners to strengthen the focus on cardiovascular health, early prevention, early detection and screening, including recognition of FH and elevated Lp(a). I also presented progress from the Lp(a) ITF, led by FHEF. Amgen participates in the ITF as an industry partner, represented by Victoria Tzouma as an industry observer.
One particularly encouraging moment was seeing that work originally developed through the European and international Lp(a) community is now travelling beyond Europe. The Brussels International Declaration on Lp(a) and the evidence on the cost-effectiveness of Lp(a) testing in primary prevention are increasingly being referenced by advocates in the United States. That is an important sign of growing awareness. Elevated Lp(a), until recently a relatively specialised topic, is moving into mainstream conversations around cardiovascular prevention and early detection.
The first formal day of the Summit was probably the most immediately practical for me. Richard Shotton’s keynote on behavioural science, followed by a smaller workshop, challenged a basic assumption that many of us in health advocacy make: if we give people enough good information, they will act. Often, they will not. His examples showed why communication needs to work with human behaviour rather than against it. Concrete language is more memorable than abstract language. Showing that others are already taking action can influence behaviour. Making participation visible matters. And individual human stories can sometimes motivate action more effectively than pages of statistics. That has obvious applications for FHEF. How do we encourage someone to have their cholesterol measured? How do we make Lp(a) testing normal? How do we mobilise people around a consultation or policy ask? How do we encourage compassionate giving and fundraising? The lesson was not to abandon evidence. It was to translate evidence into messages people can understand, remember and act on.
A second workshop, Engaging in Dynamic Times, led by Lynn Hanessian, prompted another useful realisation. What is one of FHEF’s most important strategic assets? Not a report. Not a website. Not even a project. Our community. The leaders of patient organisations and ambassadors across our network are informed, connected and—when there is a meaningful call to action—remarkably willing to act. That is an asset we need to use more strategically.
The session on Generative Engine Optimization (GEO) with Kristin Musselman brought another dimension. People are increasingly seeking health information not only through Google or social media but through AI-generated answers. For patient organisations this changes the challenge. Producing accurate information is no longer sufficient. We also need to make sure that information is structured, visible, findable, authoritative and trusted enough to be surfaced in new information environments. This is particularly important in inherited lipid disorders, where misinformation can easily fill the gaps left by limited awareness.
One aspect of the Summit deserves separate mention. I have attended many healthcare and industry events over the years, but rarely have I seen so many senior company leaders present and directly accessible to patient organisations over several days. The programme included discussions with Executive Vice President Murdo Gordon, senior research and medical leaders, business leaders across therapeutic areas and, informally, members of the company’s most senior leadership. That level of access is valuable—but only if patient organisations use it.
The point should not simply be networking. It should be the opportunity to ask difficult questions, challenge assumptions, explain where systems are failing patients and demonstrate what genuine partnership can achieve.
There is also an important cultural difference. The US healthcare and advocacy environment is not Europe. Patients have a different relationship with insurers, medicines and healthcare providers. Direct-to-consumer advertising makes medicines much more visible to the public. Elected politicians are often directly targeted by advocacy organisations. Questions of access and equity are very real, but they manifest differently.
There is a great deal European organisations can learn from US advocates: being more vocal, making policy asks more explicit, approaching elected policymakers directly and using lived experience confidently. But we should not simply copy the US model. Europe has different health systems, regulatory frameworks and traditions—and Europe itself is far from homogeneous. What works in one country may fail completely in another. There is also much we can share in the opposite direction. The Safe Hearts Plan is a good example of European patient and professional organisations working over several years to move cardiovascular health and prevention higher up the political agenda.
The final day produced perhaps my most important scientific reflection. A plenary moderated by Jennie Freibergs began in an unusually human way. Speakers introduced themselves using childhood photographs and explained how experiences from their early lives had influenced who they became and what motivated their professional work. It was a clever reminder that behind senior positions in research, health, advocacy and business sit very personal histories.
But the session that stayed with me most was Designing Equitable and Trustworthy Solutions, moderated by Amgen Chief Medical Officer Paul Burton, with Suna Avcil, Michelle Geller and Cameron McClure. The discussion touched on digital medicine, new approaches to clinical research and how technology may change evidence generation. It made me think about what I would call generational clinical trials in inherited lipid disorders. Within the same family, we may have a parent with FH or elevated Lp(a) who has already experienced myocardial infarction, stents or bypass surgery and a child with the same inherited risk who was detected early and may never develop clinical cardiovascular disease. Biologically related. Potentially carrying the same inherited risk. But living fundamentally different patient journeys. One is being treated after disease has developed. The other may be living a completely normal life while managing a cardiovascular risk factor from childhood.
As our advocacy succeeds in moving detection earlier, this becomes more than a theoretical issue. Will clinical trials designed around established cardiovascular disease remain sufficient? Are the traditional endpoints still the right endpoints? How do we demonstrate benefit in people whose success should be measured partly by the cardiovascular events they never experience? Industry needs to be preparing now for a greater focus on primary prevention. Earlier detection will eventually require different research questions, different populations, potentially longer follow-up and more thoughtful endpoints. If our goal is to preserve cardiovascular health rather than wait for disease, research must evolve accordingly.
Before leaving for the airport, I joined the final cardiovascular workshop with US patient advocacy colleagues, including Holly Paige from the Family Heart Foundation and many new and familiar peers. It was a fitting way to finish.
There is a great deal we can learn from one another, a great deal we can share, and significant room for collaboration.
Across four days, several messages became clearer for me:
For FHEF, the Summit was therefore strategically valuable not because we agreed with everything we heard, nor because every US approach is applicable to Europe. Its value was in having four days to connect, listen, present our work, demonstrate what collaboration can achieve—including through FHEF and the Lp(a) ITF—and directly challenge some of the people shaping research, policy, access and patient engagement within one of our industry partners. That is what meaningful stakeholder engagement should allow.
The real measure, of course, is whether the insights will meet the desired impact.
July was a month of preparation, advocacy, and momentum across the FH Europe Foundation network, with major developments in screening policy, rare disease recognition, precision medicine, and emerging treatment options. As the community prepares for FH Awareness Day, EU Screening Week, and key international events, efforts continue to advance early detection, patient empowerment, and equitable access to care for inherited lipid disorders.
Catch up on the key highlights from the July 2026 edition of Heart Beat: