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
FH Europe Foundation is thrilled to announce its official membership in the BBMRI-ERIC Stakeholder Forum as part of the Patients' and Citizens' Pillar. This milestone aligns with our mission to amplify patient voices and foster collaboration in the fight against familial hyperlipidaemias and related cardiovascular and rare disorders.
The Biobanking and Biomolecular Resources Research Infrastructure - European Research Infrastructure Consortium (BBMRI-ERIC) is a European network dedicated to advancing biomedical research through biobanking. It connects key players, including researchers, industry leaders, patients, and biobankers, to foster collaboration and innovation. With 23 member countries and one international organization, BBMRI-ERIC is one of Europe’s largest research infrastructures.
A biobank is a repository for storing human biological samples—such as blood, tissue, cells, or DNA—alongside critical data related to those samples. These resources are essential for advancing health research and understanding complex diseases like heterozygous and homozygous familial hypercholesterolemia (HeFH and HoFH), elevated lipoprotein (a) (Lp(a)) and familial chylomicronaemia syndrome (FCS).
As part of this prestigious forum, FH Europe Foundation will work to advocate for equitable access to biobanking resources and innovative healthcare solutions.
At the same time, it will enhance awareness about the role of FH, elevated Lp(a) and FCS in cardiovascular health and its implications for European healthcare systems. We believe it will empower our ambassadors and advocates by ensuring their voices guide research priorities and healthcare policies.
This partnership marks a pivotal step in FH Europe Foundation’s mission to bridge cutting-edge research and patient needs, driving equitable healthcare solutions.
Stay updated on our journey with BBMRI-ERIC and share in our efforts to transform cardiovascular health research.
Prepared by Emma Print,
FHEF Community Engagement Manager
Explore the highlights from FH Europe's October 2024 Heart Beat newsletter to catch up on the latest news and events in the world of cardiovascular health:
On September 27, 2024, the 10th medical day of the Société Libanofrançaise d’Endocrinologie et de Diabétologie (SOLFED) took place in Lyon, France. The event featured discussions on key health issues, including obesity, diabetes, and homozygous familial hypercholesterolaemia (HoFH). A presentation on HoFH by endocrinologist Dr Magda Zaarour highlighted the complexities of diagnosing and treating this rare condition. During her talk, Dr Zaarour also introduced organisations raising awareness about HoFH, including the FH Europe Foundation, with two of our Patient Ambassadors sharing their powerful testimonies.
Chyrel Lichaa's advocacy efforts in Lebanon
Chyrel Lichaa, a HoFH patient from Lebanon, shed light on the significant challenges HoFH patients face due to Lebanon's ongoing economic crisis, particularly the lack of access to critical treatments like LDL apheresis filters. Despite these difficulties, Chyrel has been a fierce advocate for patients, leading a campaign that reached hospital administrators, national key opinion leaders, government officials, and the Ministry of Public Health. Her tireless efforts aim to underscore the importance of patient advocacy in improving healthcare access. Chyrel’s impactful work will be further highlighted when she presents her abstract on this topic at the IAS Symposium in Oman this December. She emphasised the need for strong patient organisations, especially in the Middle East, to support individuals in their daily battles with this condition.
Maria Nassif’s Experience with LDL Apheresis in France and Lebanon
Maria Nassif, a HoFH patient originally from Lebanon but now living in France, shared her personal experience with LDL apheresis in both countries. Maria noted a significant difference between the treatments, explaining that the slower apheresis process in France allows for more efficient cholesterol removal, resulting in lower LDL-C levels. Interestingly, both procedures use the same machine, but it was scientifically proven that a slower blood flow through the filters yields better outcomes. Maria also shared images showing how xanthomas on her knuckles disappeared after just two years of treatment in France, illustrating the effectiveness of consistent, high-quality care. Her journey inspired her to join the FH Europe Foundation, where she now advocates for the sharing of best practices around LDL apheresis.
At FH Europe Foundation, we are proud of our patient ambassadors, Chyrel and Maria, for their courage, advocacy, and dedication to improving the lives of those affected by HoFH. Their stories highlight the importance of patient advocacy and international collaboration to advance treatment options and raise awareness for this rare condition.