Today, 24 March, is Lp(a) Awareness Day. Elevated lipoprotein(a), or Lp(a) concentration, is an inherited lipid condition and an independent, very significant risk factor for cardiovascular disease. While elevated Lp(a) levels can be diagnosed through a simple blood test, it is estimated that one in five people have elevated Lp(a) concentrations, significantly increasing their risk for heart attacks and strokes, even at a young age.
Alarmingly, only 1% of the population in middle- and high-income countries have had an Lp(a) measurement and most of those with elevated concentrations are not informed about their increased risk of experiencing a first or recurrent cardiovascular event. There is very little public awareness about this common inherited risk factor, and there is also limited awareness and knowledge among general practitioners (GPs) and the wider healthcare professionals' community.
This presents a crucial missed opportunity for CVD prevention, early detection, the avoidance of costly treatment, care and hospital admissions impacting on the already stretched health systems and the significant burden to individuals and their families across their life course, following a CVD episode.
Given the gravity of elevated Lp(a), FH Europe Foundation set up a dedicated Lp(a) International Task Force in 2023, to develop and implement a five year strategy to address major gaps in policy, awareness, understanding of cost-effectiveness, personalised prevention approaches, and the role of digitalisation and data in encouraging a more comprehensive approach to systematic testing of populations. Professor Florian Kronenberg, Chair of the Task Force said “This Task Force is unique as it is composed of Lp(a) experts and experts from other disciplines from across the globe, to focus on making Lp(a) testing the norm and managing this alongside other risk factors”.
Emma Print, FH Europe Foundation’s Community Engagement Manager has been coordinating activities around the Lp(a) Awareness Day. She said “As a person living with Lp(a) and FH, I am grateful that I was diagnosed relatively early – but I met formidable barriers in the process. I now have the privilege of working with the FH Europe Foundation and to help raise awareness among as many people as possible, today – and indeed all days. We work with Lp(a) Ambassadors, who have the lived experience and knowledge, to share their powerful stories, like the one of Marc’s”.
This year we really wanted to support the community by providing them with the opportunity to “Ask Me Anything About Lp(a)”. Through our social media and email campaign we encouraged members of the public to complete an online form enabling them to ask any question about Lp(a) to our international panel of experts which included researchers, clinicians and people living with elevated Lp(a). The response was tremendous and culminated in a webinar on Thursday 21st March where our experts answered as many of the questions as possible.
The FH Europe Foundation is committed to building awareness- year on year- among the public and physicians on the importance of measuring for Lp(a). A particular feature this year, however, is an Open Letter from the International Task Force to policymakers and, setting it in the context of the wider burden of cardiovascular disease and the urgent need to ‘prevent the preventable’. Magdalena Daccord, FH Europe Foundation CEO said “We are deeply concerned that elevated Lp(a) is largely invisible in the health policy space, and we need to change that. With the International Task Force, we are creating an unprecedented momentum to finally get this on the political radar”.
For press queries, please contact Magdalena Daccord on md@fheurope.org .
More about FH Europe Foundation: https://fhef.org/
More about the Lp(a) International Task Force: https://fhef.org/lpa-international-taskforce/
On the eve of the Lp(a) Awareness Day, we have this personal blog prepared for you by Marc Rijken, one of our Ambassadors and Members of the Lp(a) International Task Force. Marc shares his powerful story and a call to action to get to know more about an invisible risk factor which affects one in five people. But hold on, there is more. You can meet Marc’s family and learn more about their daily life if you open a link to the very immersive article with additional pictures and videos.
Dear all,
Today marks a strange day, as it is exactly 10 years ago that I suffered a (first) heart attack. I know that not all of you are aware, apologies if I gave you a scare. I am currently doing very well and aim to be the fittest heart patient of the Netherlands 😊.
For me, it took 6 very long years and two heart attacks, until the diagnosis and root cause of my heart/artery issues (elevated levels of Lp(a)) was made. By coincidence, my “anniversary” is only 1 day away from the Lp(a) Awareness Day, March 24.
As I am sure most of you are unaware of Lp(a), I thought this was a good time to tell you a little bit about this.
Lp(a) is a lipoprotein and is part of everybody (just like for example cholesterol is). If you however have elevated levels of this protein, you have an increased risk of cardiovascular diseases (heart attacks, atherosclerosis, and related). It is inherited and runs in families, so if your relative, especially parents had or have heart issues, you should be alerted.
Why do we need an Lp(a) Awareness Day, you might think, … here are some reasons:
By sharing this post and attempting to raise knowledge and awareness of Lp(a), I hope to be able to protect others from a similar (patient) experience; time is of the essence! Besides time, knowledge can make the difference, as certain life(style) choices can be made to reduce the risks.
As elevated levels of Lp(a) is genetic, my family was also tested and two of my daughters unfortunately inherited this disorder. This was difficult to accept at first, but currently I am confident that they will be able to live a healthy life (now that they are aware).
Throughout the last 10 years I have learned a great deal about myself, and I look back with pride on the way I (and my family) have coped with this. I have also learned through my role as a Patient Ambassador with FH Europe Foundation, what a difference it can make for others to share our experiences and to interact with other fellow patients.
I could not have imagined the network, projects, webinars, the Global International Lp(a) Taskforce, scientific congresses, partnerships and friendships (hey it even got me into the European Parliament in Strasbourg), which elevated Lp(a) has also indirectly given me (through my ambassadorship).
Which brings me to my first sentence of this post, a strange day, as the journey came with a lot of emotions (such as fear, worry, frustration, anger, and sadness).
You can read all about the impact which elevated Lp(a) has had on me and my family over the past 10 years which has been very well put into words in the following article: https://live.novartis.com/article/family-ties/family-ties-subsection. (Thanks Goran)
Thanks for taking the time for this post - turned into a blog - and please feel encouraged to spread the word (awareness)!
Marc Rijken
Let us know if this story how this story affected you. Are you suspecting elevated Lp(a) in your family? If you need additional information, please contact Emma@fheurope.org.
We are delighted to welcome to our team Reante Kaal-Poppelaars, as our Project Manager for Internal Processes. We could not be more excited, as with the growth of the organisation we want to put in place robust processes to be more effective and efficient. Another reason to celebrate is the fact that Renate is joining the FH Europe Foundation as our first volunteer in the project team, demonstrating our commitment to building opportunities for volunteers within our operational structures.
Renate will lead activities focusing on internal processes review and improvements, organising FH Europe Foundation’s SharePoint, and laying the groundwork for a customer relations management tool (CRM) implementation. With a passion for making a difference in the lives of those affected by inherited lipid disorders and having a personal family experience with it, she is eager to apply her professional experience, skills and knowledge to help streamline the Foundation's operations and enhance the team's impact.
"I am deeply motivated to join the FH Europe Foundation, not only to share my experiences but also to learn from this community. Having lived through the challenges and revelations of managing elevated Lp(a) within my own family, I understand the importance of support, awareness, and education in navigating these health issues. This year I turned 54 and the stark reminder is that my father passed away from a heart attack at the age of 53—a milestone I have now passed. I look forward to collaborating with the Foundation, its members, and the wider community to contribute to our collective efforts in improving patient care and outcomes. Together, I believe we can make a significant impact." says Renate about her motivation to join the FH Europe Foundation.
About Renate
Her connection to the cause of FH Europe is very personal. Living in the Netherlands with her husband, Edwin, and their children, Aedan and Indy, her family has navigated the complexities of FH and elevated Lp(a). While she was relieved to discover that their children did not inherit Edwin's FH, she learned that Aedan and herself both have elevated Lp(a), a revelation that has explained much of their family's medical history, including her father's heart health challenges. This journey has brought their family closer and intensified her commitment to health awareness and support for those on similar paths.
In addition to her role at FH Europe, Renate is involved in running her family's company. Her career path before joining the family venture had been varied, spanning several key industries. She had held positions as a Project Manager and in managerial roles within banking, healthcare insurance, and medical services in Amsterdam, as well as with the Amsterdam municipality. A consistent theme in her career has been her gravitation towards creating and enhancing organisational structure. In her spare time, she loves reading, spending time with her family, and walking her three dogs.
"I could not be more thrilled to be able to bring to our team someone like Renate. Her joining as a volunteer demonstrates the value we create to the community in a greater sense. Since coming on board, Renate brought a lot of enthusiasm and excitement to our team about getting our processes sorted. That is a good sign and a very critical step in our growing organisation!" – added Magdalena Daccord, FH Europe Foundation's CEO.
Brussels 14 March 2024: The European Alliance for Cardiovascular Health (EACH) welcomes the recent announcement by the European People’s Party to include a ‘European Cardiovascular Health Plan’ as a core component of their electoral manifesto.
“We are launching a European Cardiovascular Health Plan because we know that cardiovascular disease is the biggest killer in the EU. This plan should include a European Knowledge Centre and promote a joint cardiovascular and diabetes health check.” European People’s Party (EPP) Manifesto full version can be found here.
This historic step answers the urgent need for comprehensive action to address Europe’s health crisis and tackle its leading cause of death – cardiovascular disease which costs the EU €282 billion every year. The long-term mission to achieve a healthier Europe was the reason why the European Alliance for Cardiovascular Health (EACH) was created in 2021 as a coalition of patients, healthcare professionals, researchers, and health industry representatives.
The inclusion of cardiovascular health in the EU electoral manifesto comes after two years of effort by EACH partners to advocate for a comprehensive EU policy response. In December 2023, the EACH exhibition Vote Cardiovascular Health 2024 took place in the European Parliament. The exhibition showcased the burden of cardiovascular diseases in figures per each EU Member States. The very urgent public topic, advocacy efforts on the national level as well as the engaging and innovative format of the event attracted over 100 Members of the European Parliament (MEPs) from 20 countries, who pledged action at both the EU and national level.
Emma Print (FH Europe Foundation) conducting a video interview with Ulrich Janßen, a patient representative from Germany.
MEP Łukacijewska, Co-host of the event, signing the Pledge wall.
Marc Rijken together with his wife Manon and daughter India, delivered a powerful and a very emotive closing speech along with three other fellow patients at the Opening Ceremony.
The EACH Cardiovascular Health Plan for Europe was launched in May 2022. Its key goals are to:
To achieve this, the focus will need to be on primary prevention at the population level, improvements in secondary prevention through timely detection, equal access to high-quality patient-centred healthcare, and increased uptake of rehabilitation.
More specifically, EPP calls for the European Knowledge Centre and European Cardiovascular Health Check as an integral part of the EACH proposed Vision.
A European Cardiovascular Health Data Knowledge initiative aligns with the European Health Data Space to establish a unified system for cardiovascular data. By integrating various sources of information, including registries and patient-generated data, this effort aims to enhance connectivity, promote collaboration across borders, and facilitate research and innovation in cardiovascular health. Similarly implementing European Cardiovascular Health Checks for common risk factors (including among several biomarkers LDL cholesterol and elevated Lp(a)), and with due consideration to gender differences, can help diagnose early, prevent disease, promote cardiovascular health (CVH), and save healthcare costs.
EACH believes that a dedicated Cardiovascular Health Plan that covers the full spectrum of cardiovascular health during a person’s entire life, can alleviate the burden of CVD on millions of people. It will also benefit societies and economies and will have a trickle-down effect engaging the whole cardiovascular health community with the creation of national CVH plans that are tailored to national contexts and needs.
“In addition to awakening the political will to tackle this serious health challenge, we need a paradigm shift in how the stakeholders are currently engaging. All stakeholders need to engage (...) to tackle cardiovascular health (...) in ways they have never done before.” EACH Patient Representative.