Explore the highlights from FH Europe's November 2024 Heart Beat newsletter to catch up on the latest news and events in the world of cardiovascular health:
“Last Monday, November 18th, my family and I had the honour to speak at the EACH (European Alliance for Cardiovascular Health) event, held at The Hotel in Brussels. Titled “Rising to the Challenge: Time for Action to Cardiovascular Health”, this was the second gathering aimed at advocating for a Cardiovascular Health Plan for Europe. The event united several key stakeholders, including policymakers, healthcare professionals, industry representatives, and patient advocates, to discuss further actions that have to be taken to improve cardiovascular health across Europe.
Cardiovascular diseases (CVD) are the number one cause of death in Europe, and my family has unfortunately experienced first-hand how destructive and impactful cardiac events are. My father, Marc Rijken, and two sisters, Arwen and Beau were all diagnosed with elevated Lp(a); a genetic lipid disorder running in the families that increases the risk of premature cardiovascular disease, for which there are no approved medicines available as of yet. As ambassadors of the FH Europe Foundation, my family and I strive for early screening and detection and increased investment in research to develop medicine for elevated Lp(a) and other familial lipid disorders and CVD risk factors. We firmly believe that no family should, or has to, endure what we have experienced.
When the Cardiovascular Health Plan is accepted and implemented, this will increase detection of cardiovascular disorders throughout Europe before it is too late, and save many lives doing so. At the EACH event, my family had the chance to get our voices heard, and tell our story, urging the Members of the European Parliament (MEPs) to not only put cardiovascular health on the agenda but take the action that is needed! Being able to speak directly to MEPs both at this event, as well as at the kick-off event last year in Strasbourg has been very inspiring and has made our advocacy journey feel more impactful. However, what makes EACH event particularly special, is connecting with other ambassadors and advocates who share our vision for a healthier future. These moments of solidarity, with my family and others, remind us of the collective strength behind this movement and the importance of working together to reach our shared goal and drive change.
But, we cannot stop here. Our advocacy journey has only just started. The coming months will be crucial in the development of the EU Cardiovascular Health Plan. So, let’s all keep coming together for change, and hold our policymakers accountable for their commitments. Together, we can create a future where cardiovascular health is a priority for all. On to a better future.
#VOTEHEALTH 2024,
India Rijken <3
We are excited to announce an important transition in the governance of FH Europe Foundation (FHEF). This period marks a new chapter as we welcome new members to our Board of Trustees and express our heartfelt gratitude to those stepping down after years of dedicated service.
A Fond Farewell and Heartfelt Thanks
We extend our deepest thanks to John Reeves, Giovanni Nisato, and Dorota Zgodka, who stepped down at the end of 2023 after serving FH Europe and the FH Europe Foundation with dedication and expertise for over three years. With the new Trustees joining FH Europe Foundation, we also say thank you to Annelies Dol, Gergely Jambrik, Sam Gidding and Marius Geanta who served on the Board in the transition period until Nov 19th, 2024.
John Reeves served as Treasurer of FH Europe, the charity, and then as Chair of the Board from mid-2021. John played an instrumental role in transitioning FH Europe from a charity to a foundation based in the Netherlands and spearheaded the initial efforts to secure the foundation’s first EU grant—an achievement FH Europe Foundation realized on its first attempt. Based in Switzerland, Giovanni Nisato and Dorota Zgodka brought a wealth of experience in the innovation and pharmaceutical industries as well as European Union projects, contributing invaluable insights that have shaped the foundation’s direction and capabilities. Additionally, Anneliese Dol and Gergely Jambrik represented the voice of patients on the board, with Gergely also serving as a leader among FHEF network patient organisations. Together, they played a critical role in overseeing legal aspects of the organisation. From the Netherlands, Anneliese led the establishment of the foundation by navigating legal challenges and securing banking services for a nonprofit in the Netherlands—a year-long effort that once seemed insurmountable. Prof. Sam Gidding, although based in the USA, has been the driving force behind FH Europe’s scientific work, particularly in advancing best practices for paediatric FH screening. His efforts culminated in important publications following the Slovenian Technical Meeting and the Czech Senate Meeting. Finally, while Dr Marius Geanta steps down from his role as trustee, he will continue as an active member of the FH Europe Foundation Expert Group. With his extensive expertise in innovation, precision medicine, and personalised prevention, Marius will remain a key advisor, helping to drive a new narrative for cardiovascular health.
Welcoming Our New Board Members
We are honoured to announce that, as of June 2024, Prof. Joanna Lane has joined the board as Chairperson, along with Prof. Albert Wiegman as Secretary of the Board. Joining them are Dr Ingrid Klingmann and Jan van der Schaff, who assumed the role of Treasurer in November 2024. Each of our new trustees brings invaluable experience, leadership, and passion to further our mission and drive impactful change for those affected with familial hyperlipidaemias.
Meet FHEF’s New Trustees
Prof. Joanna Lane, originally British, she resides in the Netherlands. Lane is an influential figure in the health sector, currently serving as the Managing Director of Stichting HCN, a social foundation based in Amsterdam. Her work focuses on enhancing value creation within health
ecosystems through collaboration among diverse stakeholders. Additionally, she is a professor at the Centre for Health and Technology at the University of South-Eastern Norway.
Lane has recently been appointed as a co-chair of the Advisory Board for the THCS Partnership, where she plays a crucial role in guiding efforts that bridge research and policy to create actionable solutions in health care. Her extensive background includes previous positions such as Special Professor of Health & Public Policy at the University of Nottingham and Director of Research & Evaluation at the Health Education Board for Scotland. Her work is marked by a commitment to innovative health solutions, particularly in the context of health promotion and chronic disease management, which are vital areas of focus given the current global health challenges.
Prof. Albert Wiegman, is a prominent paediatric cardiologist based at Amsterdam UMC in the Netherlands. He specializes in the early detection and management of familial hypercholesterolaemia (HeFH and HoFH), a genetic condition that can lead to early cardiovascular disease due to high cholesterol levels. His work emphasises the importance of paediatric screening and genetic testing to improve outcomes for children with this condition, advocating for earlier diagnosis and appropriate intervention. Wiegman became a paediatrician and member of the staff at the Amsterdam University Medical Center in 1991. In 1993, he completed his sub-specialization in paediatric cardiology. In that year, the paediatric-lipid department came under his care. He started his research into the treatment of familial hypercholesterolemia in children, in close co-operation with prof John JP Kastelein, Head of the department of vascular medicine. He brought the research to completion in his thesis: 'Paediatric implications of heterozygous Familial Hypercholesterolemia'. In 2020, Albert was appointed associate professor and principal investigator. Since 2019 he has been actively involved with FH Europe in the groundbreaking project on FH Paediatric Screening as the EU Public Health Best Practice which was accepted by the European Commission in 2020. Since then, Albert has been active in the Scientific Advisory Committee with us.
Dr Ingrid Klingmann, MD, PhD, FFPM, FBCPM, is a physician specialized in General Medicine, Clinical Pharmacology, and Pharmaceutical Medicine with over 30 years of experience in senior operational and managerial roles in pharmaceutical companies, Contract Research Organizations (CROs), and academic institutions. She is also Founder of her own consulting company, PHARMAPLEX bvba, since January 2003, focusing on pharmaceutical development and site management support. Ingrid currently serves as the Chairman of the Board of the European Forum for Good Clinical Practice (EFGCP) and was in leading roles in multiple FP7 and Innovative Medicines Initiative (IMI) projects, including ICREL, PatientPartner, PharmaTrain, Combacte, PharmaLedger and ConcePTION. She is also Past-President of the PharmaTrain Federation and President Elect of EUFEMED, the European Federation for Exploratory Medicines Development. Further more Ingrid is Module Chair in the postgraduate Master Course in Regulatory Affairs at the University of Bonn, Germany, and a lecturer in clinical trial practices and pharmaceutical medicine at the University of Basel and the Université Libre de Bruxelles, Belgium. Klingmann has been a driver for successful patient engagement through enhanced education in the medicines development process via the IMI projects EUPATI and PARADIGM and as Co-Chair in EFGCP’s “Patients’ Roadmap to Treatment Working Party” and the current EU-X-CT (Cross-border access to Clinical Trials) Initiative. Since 2023 she has been involved with FH Europe Foundation as Advisor on the Ambassador Programme.
Jan van der Schaff, is an experienced finance professional based in the Netherlands, specializing in interim financial management. With a strong background in business economics from Erasmus University Rotterdam, he excels in team collaboration and financial analysis. His
expertise encompasses company acquisitions, due diligence, and financial integration, complemented by significant roles in various organizations, including Global Switch and Fetim B.V. Jan has also been actively involved for over 9 years in nonprofit work with the Apostolic Church, reflecting his commitment to community engagement. At FH Europe Foundation he will take over the role of Treasurer.
Since the addition of Prof. Joanna Lane and Prof. Albert Wiegman, the Board, a critical strategy creation process to guide our work from 2025 to 2032 has been initiated. This strategy is driven by the growth of our organisation in the familial hyperlipidaemias space, including heterozygous and homozygous FH, elevated Lipoprotein (a), and familial chylomicronemia syndrome (FCS). We are also witnessing increased interest from various organisations outside of Europe expressing their desire to join our Network. Recently, we welcomed a new member from Singapore, received a request to join from the Chinese FH patient organisation, and supported efforts to form a patient movement in the Middle East, specifically in Lebanon and the UAE. Additionally, the Lp(a) Taskforce, established in 2023, has been active internationally, working to address the challenges associated with testing elevated Lp(a) levels globally and driving CVD prevention.
FH Europe Foundation is committed to enhancing the health and well-being of patients and citizens in general. Our focus is on building a strong, united Network that empowers individuals and communities to embrace personalized prevention and care. By fostering strategic collaborations and strengthening the patient and citizen voice in data collection, research, and policy development, we aim to create greater awareness and support for lasting, sustainable impacts.
This strategic development process has been further supported by Senior Policy Advisor Nicola Bedlington and Dr Tobias Silberzahn, former McKinsey Partner and Patient Ambassador, and Dr Marius Geanta, who continues as an advisor. Their combined insights and support help ensure that FH Europe Foundation has a clear “north star” guiding our future impact.
As we prepare for future generations, our ambition is to ensure that patients today receive the highest standards of personalized care, while also paving the way for innovative health solutions that respond to their needs. The growth of FH Europe Foundation will be essential in delivering on these ambitions, enabling us to set a new narrative for personalized prevention and health.
Message from Our CEO, Magdalena Daccord
"As we bid farewell to those who have given so much of their time and expertise, I want to express my personal gratitude.
John, Giovanni, Dorota, Annelise, Marius and Gergely - a group of dedicated board members have been pillars of strength and guidance for our organisation. I am equally thrilled to welcome our new trustees, whose experience in the health and non profit space and passion for creating lasting impact will be pivotal as we continue to advance our mission to support people with familial hyperlipidaemias.
I feel privileged to build upon our foundation alongside such an experienced and brilliant board and look toward a brighter future where together with Joanna, Albert, Ingrid and Jan, we can effectively prevent the preventable."
Thank you for your continued support and dedication to FH Europe Foundation! We look forward to sharing more about the work of our new board and our ongoing initiatives in the months to come.
In December 2024, the serene beauty of Muscat, Oman, will become the backdrop for one of the most important events in the fight against cardiometabolic diseases: the 20th International Symposium on Atherosclerosis (ISA 2024). Hosted by the Oman Society of Lipid & Atherosclerosis (OSLA) and the International Atherosclerosis Society (IAS), this triennial gathering will bring together scientists, healthcare professionals, patient advocates and industry representatives. Under the theme, “Towards Prevention of Cardiometabolic Diseases through Precision Medicine”, the international community will engage from December 4th to 6th, over plenary session, posters’ presentations, many discussions over coffee breaks and at the exhibitions space
But ISA 2024 is more than a meeting of minds—it’s a testament to the power of collaboration. This year, the FH Europe Foundation (FHEF) will play a central role, showcasing how patient advocacy and scientific innovation can join forces to create lasting change.
At the heart of FHEF’s participation are eight extraordinary Ambassadors who bring a unique dimension to the symposium: the voices of those living with familial lipid disorders like HeFH, HoFH, elevated Lp(a), and FCS. These voices, grounded in lived experience, will complement the science and remind everyone of what truly matters—improving the lives of patients around the world.
For the FHEF community, ISA 2024 is a milestone. Nine abstracts from FHEF’s network, ranging from patient advocacy to groundbreaking research, have been accepted for presentation. Behind these abstracts are stories of determination and resilience. Take, for example, Chyrel Lichaa, a trailblazer from Lebanon who has faced the challenges of Homozygous Familial Hypercholesterolemia (HoFH) head-on. Her presentations will highlight the launch of the first-ever HoFH Awareness Day and the urgent need for a patient organization in the Middle East. For Chyrel, these are not just academic topics—they represent her life’s mission to secure better care for patients like herself.
Across the globe, other ambassadors are making waves, too. In the UK, Jill Prawer has been an unstoppable force in raising awareness for Familial Chylomicronemia Syndrome (FCS), a rare condition that drastically alters daily life. At ISA 2024, she’ll share her journey with FCS, blending personal narrative with advocacy to inspire change. Meanwhile, in the Netherlands, Marc Rijken will take the audience on a deeply personal journey, recounting how years of unexplained heart issues and two heart attacks led to a diagnosis of elevated Lp(a). His talk underscores the importance of perseverance, knowledge, and community in navigating life with a genetic condition.
Key Highlights of FHEF’s Participation
We are incredibly proud to share that nine abstracts submitted by our community have been accepted and will be presented at ISA 2024! This is a fantastic opportunity to ensure the voices of those affected are heard loud and clear.
In total 5 posters and 4 oral presentations, which cover a wide range of crucial topics related to HeFH, HoFH, FCS, and elevated Lp(a), showcasing everything from groundbreaking research to real-world patient experiences.
In addition, Magdalena Daccord, CEO of FH Europe Foundation and Elsie Evans, FH Europe Foundation Ambassador Programme Manager, will feature in two parallel sessions sharing perspectives along with the leading medical and scientific experts. Prof. Albert Wigman, recently appointed as FH Europe Foundation's Trustee will accompany the delegation in his capacity as Scientific and Medical Expert and will be available for discussions, meetings and expertise sharing.
Beyond the stage, FHEF’s presence at ISA 2024 will extend into the exhibit hall, where a booth will serve as a vibrant hub of connection and education. Strategically positioned near the Lp(a) testing booth, this space will welcome attendees to learn more about familial lipid conditions, hear firsthand from ambassadors, and explore ways to support the community.
There, the ambassadors will do what they do best: engage, educate, and inspire. They’ll provide resources to HCP as potentially newly diagnosed patients with elevated Lp(a), share best practices with healthcare professionals, and invite attendees to join the growing global movement for better care. For anyone affected by these conditions, the booth will offer a lifeline of support and hope.
The involvement of FHEF at ISA 2024 represents something far greater than the sum of its parts. It’s a statement that patient voices matter—not just in advocacy spaces but at the highest levels of scientific discourse. It’s proof that lived experience can enrich medical education, bringing new dimensions to the understanding of cardiometabolic diseases. It’s a reminder that progress is not only about new treatments or technologies but also about empowering individuals to tell their stories and advocate for change.
For organizations like IAS, the inclusion of patients as speakers, presenters, and collaborators signals a shift in how we approach healthcare. No longer are patients merely subjects of study—they are partners in the pursuit of solutions. For the FHEF community, this moment is a celebration of years of effort to bridge the gap between science and advocacy, creating a future where every voice is heard.
As the countdown to ISA 2024 begins, the excitement is palpable. The symposium promises to be a pivotal moment—not just for science but for the global patient community. With their unwavering commitment and inspiring stories, the FHEF Ambassadors are ready to take the stage, shine a light on the realities of living with familial lipid disorders, and champion the changes needed to improve care. So, as we prepare for this landmark event, one message stands out: together, we are not just advancing science; we are transforming lives.
Stay tuned for updates from Oman and join us in celebrating the power of collaboration at ISA 2024!
For more information visit: Home - ISA 2024 Oman