Young people living with inherited lipid conditions and rare diseases bring a unique perspective to healthcare, research and policy. They understand first-hand the realities of growing up with a chronic condition, navigating healthcare systems, managing treatment, balancing education or work, and planning for the future.
For many years, patient organisations have worked hard to ensure that the patient voice is heard. However, there are still too few opportunities specifically designed for young advocates to contribute their experiences, build skills and develop leadership networks. This is why the EPF Youth Congress 2026 is such an important milestone.
The Congress recognises that young people are not simply beneficiaries of healthcare policy. They are partners in shaping it. By bringing together young patient advocates, policymakers, researchers and healthcare professionals, the event creates a space where ideas can be exchanged, partnerships can be formed, and future leaders can emerge.
For the FH Europe Foundation community, this aligns closely with our commitment to empowering people affected by inherited lipid conditions, especially familial hypercholesterolaemia (HeFH and HoFH), elevated lipoprotein(a), FCS, and severe hypertriglyceridaemia. We know that meaningful change happens when people with lived experience are involved in discussions about research, education, awareness and policy.
Youth engagement is not just about representation. It is about creating opportunities for young people to grow their confidence, expand their networks and develop the skills needed to become effective advocates. These experiences often lead to greater involvement in patient organisations, research projects, advisory boards and policy initiatives. Many of the partnerships and collaborations that strengthen our community today started with a simple introduction, a conversation at an event, or a willingness to volunteer. That is why we are committed to helping young people connect with organisations and networks across Europe.
If you are interested in patient advocacy, healthcare policy, research, awareness raising, communications or community building, now is the perfect time to get involved. Whether you are already active in a patient organisation or taking your first steps into advocacy, there are opportunities to learn, contribute and make your voice heard.
Through our partnerships and networks, we can help introduce you to organisations, initiatives and opportunities that match your interests. We are also continuing to develop our own youth engagement activities and build a stronger youth community within FH Europe Foundation.
We are looking for enthusiastic young people who want to:
Your experience matters. Your insight matters. Your voice matters.
Join us in building a stronger, more connected and more empowered community of young advocates across Europe.
Interested? Contact elsie@fheurope.org and start the conversation today.
Written by Elsie Evans
Anticipation for the EUPATI Annual General Meeting 2026 began for me in a rather unexpected place: a passport control queue at Brussels Airport. After five hours waiting to get through passport control, I was still determined not to miss the opening discussions. Fortunately, the event was being streamed online, so I joined the first sessions from the queue and made good use of the time.It was not quite the start I had planned, but in some ways it reflected something important about patient engagement: finding ways to participate, adapt and stay connected when circumstances create barriers. When I finally arrived in person, the energy and sense of shared purpose were already clear. And one message stayed with me throughout the two days: patient involvement is changing. The question is no longer simply whether patients have been invited into the room. We also need to ask whether our knowledge influences the questions being asked, the decisions being made and, ultimately, the outcomes–and what difference our involvement actually makes.
The EUPATI Annual General Meeting 2026, held in Brussels on 24 and 25 September under the theme “Data & Dialogue”, brought together EUPATI Fellows, National Platform representatives, patient organisations, researchers, regulators, health technology assessment representatives and other partners. As a EUPATI Fellow, FH Europe Foundation Ambassador and FHEF Community Manager, I found many of the discussions particularly relevant to the work we do within the inherited lipid community.
One of my strongest takeaways was that patients should not simply be seen as people to consult. We can be evidence partners.
Patients can help identify unmet needs, shape research questions, select outcomes that are meaningful to the community, interpret findings and communicate results. But this requires involvement early enough to make a difference. Asking patients for their views once the research priorities, methodology or outcomes have already been decided is very different from genuinely co-creating research.
For me, this is where we need to keep challenging ourselves. When patients contribute their knowledge and experience, can we clearly see where that contribution influenced a decision? Can we explain what changed because patients were involved?
Patient Experience Data were naturally at the heart of many discussions. It can help us understand how a condition, treatment or healthcare pathway affects people's lives beyond clinical efficacy–the “softer” information that tells us what living with a condition or taking a treatment actually means for a person and those around them. This evidence can come from surveys and questionnaires, interviews and focus groups, patient preference studies, registries, patient journey mapping, qualitative research and insights generated directly by communities.
But an important point raised during the meeting was that we do not always have a shared understanding of what Patient Experience Data actually is. Not all real-world data captures patient experience, and patient experience evidence is not yet used consistently in formal decision-making.
The challenge is therefore to protect the richness of lived experience while applying enough structure and methodological rigour for it to inform research, regulation and healthcare decisions. That means appropriate consent, responsible data stewardship, clear analysis and transparent reporting–but also, importantly, a willingness to share.
Healthcare and research are often more comfortable with numbers than with qualitative evidence. Yet numbers alone cannot always tell us what matters most to people living with a condition. One example discussed during the meeting really stayed with me: in a global survey, pain and fatigue were ranked as greater concerns than fractures for the community concerned. It was a simple but powerful illustration of how patient-generated evidence can challenge assumptions about what matters most.
It made me think about inherited lipid conditions too. Are we adequately capturing diagnosis-related anxiety? The impact of family risk? People's experiences of screening? Treatment burden? Uncertainty? What it means to live with a lifelong condition, even when you may feel perfectly healthy?
Clinical indicators are essential, of course, but they do not always tell the whole story.
Education and capacity building were central themes throughout the meeting. Patients and patient representatives need opportunities to build their knowledge and confidence–whether that means understanding research and medicines development, communicating with different stakeholders, raising awareness or contributing effectively to projects.
But education cannot only be directed at patients.
Researchers, regulators and other professionals also need the knowledge and skills required to involve patients meaningfully and, crucially, to recognise and use the expertise that patients bring. Inviting someone to a meeting does not automatically mean they have been meaningfully involved. People need to understand why they are there, what is expected of them and where they can influence decisions. They need clear information, plain-language documents–and yes, that includes the emails we send–time to prepare and ask questions, feedback after contributing, and recognition of their time, knowledge and experience.
The EUPATI Patient Expert Training Programme helps patients understand medicines research and development and where patient involvement can make a difference. National Platforms bring these opportunities into national and local contexts, while condition-specific organisations bring another essential piece: the knowledge needed to understand and represent the needs of a particular community. These different forms of expertise complement each other.
Technical language remains one of the most obvious barriers to meaningful involvement. Complicated invitations, project documents and meeting materials can leave people feeling that they are not qualified enough to participate, even when they have exactly the lived experience and knowledge that a project needs. For me, plain language is therefore much more than a communications preference. It is part of making patient involvement genuinely inclusive.
If people cannot understand the information they receive, how can we expect them to participate confidently and on equal terms? Accessible communication opens participation to people beyond those who are already comfortable with scientific, medical or professional terminology. This is something I see as particularly important in Ambassador training, patient education and research collaborations. Accessibility should not be something we add at the end. It needs to be built in from the beginning.
Another recurring theme was trust. Reliability, legitimacy, transparency, honest conversations, meaningful feedback and respect all contribute to trusted patient engagement. When patients and communities share information, they should be able to ask very practical questions:
Why is this information being collected? Who will have access to it? How will it be used? Will artificial intelligence or other technologies be involved? What happens when the project ends? Will the community hear about the results? And, again, what changed because people contributed?
I think these questions become even more important as patient organisations and communities generate increasing amounts of data themselves. How do we generate knowledge together while ensuring that it remains accessible, transparent and useful to the communities that helped create it? Patients should not disappear from a project as soon as their data have been collected.
One question from the meeting particularly resonated with me: projects routinely think about return on investment, but what about the patient community's return on engagement?
Patients and patient organisations contribute time, knowledge, relationships, credibility and community trust. That contribution has value.
Before asking people to give their time to a project, perhaps we should ask more systematically: Will this benefit the community? Will participants gain useful knowledge or skills? Can their contribution genuinely influence research, healthcare or policy? Will they receive feedback? Is there a realistic opportunity to achieve something meaningful?
Patient involvement should not be measured simply by how many patients attended a meeting or completed a survey. We should also look at what their participation achieved–including for the people who gave their time and expertise.
I also came away thinking about the importance of strong national and local connections.
EUPATI National Platforms help bring patient education and involvement closer to communities, but every country has a different context in terms of funding, infrastructure, volunteer capacity and institutional support. Local-language training and locally relevant networks can make opportunities much more accessible.
During the meeting, I had the opportunity to connect with National Platforms from the Netherlands, Estonia, Austria and Switzerland. I see real potential in strengthening links between these networks and organisations working on inherited lipid conditions at national level.
It is not only about creating more opportunities for individual patient advocates. It is also about building capacity across our organisations and communities.
The meeting concluded around six connected principles: patient experience matters; Patient Experience Data should be systematically integrated into research and development; work should be co-created with patients; new skills are needed; education must cover the whole ecosystem; and progress depends on partnership.
For me, these ideas come back to one simple point: Listening is not enough.
We have spent years making the case that patient voices should be heard. The next step is making sure that patient knowledge is respected, supported and systematically used.
Patients should not simply be contributors to research and healthcare. With the right education, structures, trust and opportunities to influence decisions, we can become genuine partners in shaping them.
Written by Elsie Evans
Biotechnology is helping to change how health conditions are diagnosed, treated and managed. For people and families affected by inherited lipid conditions, scientific progress may bring new tests, treatments and hope for the future.
Biotechnology uses living cells, genes or other parts of nature to develop new medicines, tests and treatments. Put simply, it uses science based on how the body works to find new ways to prevent, diagnose and treat health conditions. For people and families affected by inherited lipid conditions, this progress may bring better tests, new treatments and hope for the future.
However, progress only has value if it meets patients’ real needs and people can access it. The European Patients’ Forum (EPF) has published recommendations for the upcoming European Parliament negotiations on the EU Biotech Act. Discussions began in parliamentary committees in June 2026, with amendments submitted in July 2026. Negotiations are expected to intensify during autumn 2026, although no final date has yet been announced. The European Patients’ Forum is calling for patients and patient organisations to have a meaningful role in shaping decisions about biotechnology, clinical research and access to new medicines.
People living with inherited lipid conditions need innovation. But from a person living with these conditions point of view, innovation is not simply about creating a new treatment. It must also mean:
The EPF is asking policymakers to strengthen patient involvement in the design and oversight of clinical trials. It also wants to make it easier for patients to take part in trials across national borders. This is particularly important for people with rare conditions or limited treatment options, as the right clinical trial may not be available in their own country.
The recommendations also raise an important concern about balancing incentives for companies with patients’ ability to access medicines. Supporting research and development is important. However, public funding and other support should come with transparency, accountability and clear benefits for patients. New medicines should not remain out of reach because of their cost, where someone lives or differences between healthcare systems. From a patient’s perspective, a treatment cannot improve lives if people cannot receive it.
We are experts in their own lives right. The person living with the condition, those who care and support them understand the daily reality of living with an inherited lipid condition. They know the challenges of finding a diagnosis, managing lifelong treatment, what can stop someone from engaging in therapies, attending appointments, taking part in research and trying to access specialist care. This knowledge should be included from the beginning, not requested only after decisions have already been made. The EPF is therefore calling for permanent patient representation within the groups supporting the implementation of the EU Biotech Act. At a minimum, it wants regular and structured consultation with patient organisations, with proper support for representatives who contribute their time and expertise.
Getting it right matters and the negotiations are moving quickly. The EPF warns that speed must not come at the expense of careful discussion, public health, patient safety or meaningful patient involvement. For the inherited lipid conditions community, the message is clear:
Develop new solutions with patients, not simply for patients.
FH Europe Foundation supports a future where research and innovation lead to earlier diagnosis, better care and fair access to effective treatments, but more than that we believe persons living with the condition, their carers and families must have a meaningful voice in building that future.
Find out more:
Written by Elsie Evans
To mark FH Awareness Day 2026, FH Europe Foundation is launching a new three-part webinar series designed to help people better understand cholesterol, familial hypercholesterolaemia (FH), other lipid-related cardiovascular risk factors, and the treatment options available today and emerging for tomorrow.
Starting with the basics and progressing from understanding cholesterol, to making sense of test results, and finally exploring treatment options, the trilogy will bring together experts to translate the science into clear, practical information.
The series launches during EU Screening Week, following the announcement of the EU Know Your Numbers campaign, and against the broader backdrop of the EU Safe Hearts Plan and its ambition to improve cardiovascular health and prevention across Europe.
30 September 2026 | 18:00 CET
What is cholesterol? What is the difference between high cholesterol and familial hypercholesterolaemia? And what other lipid markers should we know about?
Our first webinar will explore cholesterol and key lipid markers, the difference between high cholesterol and FH, why early identification matters, and how science and policy can support better detection and cardiovascular disease prevention.
The session will be moderated by Magdalena Daccord, CEO of FH Europe Foundation, and will bring together:
13 October 2026 | 18:00 CET
You have had your blood tests, but what do the numbers actually mean?
This practical session will focus on understanding blood test results, cardiovascular health assessments and cardiovascular risk. It will also explore how having a better understanding of your results can support more informed conversations with healthcare professionals.
Speakers will be announced soon.
27 October 2026 | 18:00 CET
What options are available to manage high cholesterol and FH today, and what could the future bring?
Our final webinar will explore current approaches to cholesterol management and FH treatment, emerging innovations, and the role of shared decision-making in care.
Speakers will be announced soon.
Developed by FH Europe Foundation in collaboration with EPHA, the trilogy is open to anyone who wants to better understand cholesterol and cardiovascular health—whether you are living with FH or high cholesterol, supporting a family member, representing a patient organisation, or simply interested in learning more.
Registration is free and open to all.
More information about the webinars and speakers will be announced soon. Stay tuned and join us as we move from knowing your numbers to understanding what they mean–and what you can do about them.