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.
On Apheresis Awareness Day, we shine a light on a treatment that has been part of lipid care for decades–but also on the people whose lives depend on it.
Apheresis is a procedure in which blood is passed through a machine to remove specific components before being returned to the body. In lipid disorders, different forms of apheresis can be used to remove substances such as LDL cholesterol, lipoprotein(a) [Lp(a)] or triglyceride-rich plasma. For some people living with severe inherited lipid conditions, including homozygous familial hypercholesterolaemia (HoFH), very high Lp(a), or familial chylomicronaemia syndrome (FCS), it can play a crucial or even life-saving role.
For the people receiving it, apheresis can mean hours of treatment, week after week or even several times a week. It can mean needles, pain and exhaustion. It can affect work, school, travel and decisions about where to live. Access to an appropriate treatment centre–and whether treatment and travel are funded–can add another layer of uncertainty and burden. For some, apheresis begins in childhood and remains part of life for decades. For others, it becomes necessary at a particular moment, such as during pregnancy. These very different realities are reflected in the experiences shared by our community.
The stories also show why access matters. One member of our community describes having to navigate solidarity funding because her treatment is not reimbursed, alongside the cost and practical burden of travelling regularly to receive care. Another describes having to consider the availability and funding of apheresis when travelling or even thinking about moving country.
And yet, alongside these challenges, the words used to describe apheresis are powerful: a lifeline, relief, a treatment that slows disease progression, and a treatment that can make it possible to reach major milestones in life. During pregnancy, for example, two of the experiences shared below illustrate how apheresis became an intensive but essential part of protecting maternal health and supporting a safe pregnancy.
This Apheresis Awareness Day, we want to go beyond explaining the procedure. We want to listen to the people who experience it.
Below, members of our community share what apheresis means in their lives – why they need it, what it gives them, and the physical, practical and emotional challenges that can come with it.
"I started apheresis at just nine years old, and now, at 41, it has been part of my life for more than 30 years. I never imagined that a treatment I once knew nothing about would become such an important part of keeping me alive. Alongside my medication, apheresis has given me a lifeline through some of the biggest moments of my life, including pregnancy, when I needed treatment twice a week until 36 weeks.
Living with apheresis also means living with limitations that people don’t always see. I have experienced pain, difficult access, needles and vasovagal episodes, and it can be challenging explaining to employers why regular treatment is so important. Even travelling or considering relocating to another country means asking: Is there a treatment center nearby? Can they treat me? Will it be funded? My treatment has to be considered in almost every major life decision.
But despite the challenges, I am incredibly grateful for apheresis. After each treatment, I feel a sense of relief knowing that excess cholesterol has been removed and that, for a little while, my body has had a chance to reset. It is a love-hate relationship, but after 30 years, apheresis is part of who I am. It has given me more than treatment; it has given me the chance to live my life."
"At just 4 weeks old, I was diagnosed with FCS. I have been on an FCS diet my entire life.
I managed to lower my triglycerides through dieting with some success. However, during pregnancy, this was unfortunately no longer possible. In my second trimester, my triglycerides began to rise uncontrollably. I had to stay in the hospital. I started going for plasma apheresis once a week, but in the 27th week, I had to start going twice a week right up until the birth of my son in the 41st week of pregnancy. My triglycerides would sometimes spike above 20 mmol/L, but plasma apheresis lowered them to a level that was not dangerous for me and my baby. After giving birth, I had to undergo plasma apheresis one or two more times.
Plasma apheresis was a completely new experience for me. In the beginning, I was a bit scared of plasma apheresis and it was a bit painful. I had a wonderful family, doctors, and medical staff who supported me at that moment. I was aware that, at that time, it was the only thing saving our lives (mine and my baby's). I had to stay in the hospital the entire time until my son was born. It was not even that hard for me to go for plasma apheresis; somehow, I handled it all with ease. I knew the reason why I was doing it. And in the end, my effort paid off. I gave birth to a healthy son."
"I undergo LDL apheresis because I live with homozygous familial hypercholesterolaemia (HoFH). For me, LDL apheresis is a miracle treatment. It helps slow the progression of my heart disease, even though the treatment itself is physically exhausting and can cause pain, fatigue and muscle aches.
Unfortunately, in Belgium, the treatment is neither officially recognised nor reimbursed by INAMI [the Belgian National Institute for Health and Disability Insurance]. Accessing it is an uphill battle and requires support through solidarity funds. I also receive no support for transportation, even though each journey to the treatment centre takes between 45 minutes and an hour, with the additional cost of fuel.
People undergoing dialysis have access to certain forms of support that I do not receive, even though I experience similar symptoms, including fatigue, muscle aches and dry skin. There is also no one to help with the administrative procedures–my professor and the nursing team are the ones who manage them."
"My relationship with apheresis came with a very rocky start, memories over the years has faded but the chill lives on. Waking up after surgery I can still remember hearing this blood rush sound coming from my left arm heavily bandaged after the shunt was put in.
In 1987 in Johannesburg, South Africa I came face to face for the first time with this machine, scared senseless by all the pipes and filtration equipment and a lonely metal bucket the type my mother used to mop the floors and so started a love-hate relationship for approx. 3 years when it was discontinued due to the high costs involved.
So, you might wonder about the love-hate relationship, what did I love? As a 15 year old every two weeks I would miss out on a day at school, the attention from the nurses, the hospital food (it was pretty good), yet the best part was to see that very faint oily looking liquid that skimming the top in the that metal bucket, I was told that was the cholesterol, getting extracted from my blood. The hate, I am very easy when it comes to needles, they don’t bother me, having two needles shoved up your arm isn’t what I would call fun, not being able to do contact sport like rugby because I could damage my shunt, I wasn’t allowed to do wheelies with my bike, and waking up to this whooshing sound of the blood rushing through my arm. However, my total cholesterol would be closed to perfect (or whatever that meant) after each treatment, but it didn’t last long and would be at normal levels (high) in less than 14 days.
That was my relatively short experience with apheresis lasting less than 3 years before it was stopped for reasons outside our control. I would like to think that I had outlasted that green machine now languishing dust covered in some long forgotten storeroom at Charlotte Maxeke Hospital."