From December 4–6, FH Europe Foundation participated in the 20th International Symposium on Atherosclerosis (ISA 2024) in Oman. Hosted by the Oman Society of Lipid & Atherosclerosis (OSLA) and the International Atherosclerosis Society (IAS), this global gathering united experts, healthcare professionals, patient advocates, and researchers to explore innovative approaches under the theme “Towards Prevention of Cardiometabolic Diseases through Precision Medicine.”
FH Europe proudly showcased its community’s work with nine accepted abstracts, including five posters and four oral presentations. These contributions ranged from groundbreaking research to lived experiences of patients, underscoring the importance of early diagnosis, improved care, and global collaboration.
Tobias Silberzahn opened FH Europe Foundation’s participation with his compelling presentation “Lp(a) International Taskforce: An Innovative Multistakeholder Approach to Cardiovascular Health.” Delivered during the Health Economics and Policy Considerations session, his presentation outlined the goals of the Lp(a) Taskforce and highlighted the cost-effectiveness of measuring Lp(a) to prevent cardiovascular diseases. Tobias’s contribution drew the attention of leading experts, sparking lively discussions and reflecting the significant interest in tackling elevated Lp(a) as a critical health risk.
Chyrel Lichaa, founder of FH Lebanon and living with Homozygous Familial Hypercholesterolaemia (HoFH), captivated audiences with her personal and professional contributions. Chyrel presented her poster, “Launch of the First HoFH Awareness Day: Addressing Unmet Needs,” and delivered two impactful oral presentations: “Role of Patient Advocates in Securing Apheresis Access in Lebanon” and “Urgent Need for the First FH Patient Organisation in the Middle East.” Her powerful storytelling highlighted the ongoing challenges of access to treatment in Lebanon, while also showcasing the critical role of patient advocacy in driving systemic change.
Elsie Evans shared two important poster presentations: “Reduced QoL and Economic Burden Associated with HoFH: Patient Survey” and “Empowering Advocacy through Education: The FH Europe Foundation Ambassador Programme.” Elsie’s work drew attention to the profound quality-of-life challenges faced by HoFH patients and their families, emphasizing the need for healthcare policies that address economic and emotional burdens. Additionally, Elsie co-chaired a session, providing patient perspectives alongside medical experts and amplifying the role of education in empowering advocacy initiatives.
Jill Prawer delivered a deeply personal and informative oral presentation titled “Global Journey of a Person Living with FCS/Severe HTG.” Living with Familial Chylomicronaemia Syndrome (FCS), Jill shared her experiences managing this rare and severe lipid disorder. Her presentation brought attention to the burden of disease, as well as findings from a 2022 patient survey, illustrating the importance of education and awareness to support individuals living with FCS.
Marc Rijken offered a moving account of his 10-year journey to diagnosis with elevated Lp(a) through his oral presentation, “From a Healthy Citizen to an Lp(a) Patient Advocate.” Despite leading a healthy and active lifestyle, Marc faced two heart attacks, seven stents, and a bypass surgery before discovering elevated Lp(a) as the underlying cause. Fueled by his experience and the impact on his family, Marc became a passionate advocate for improved screening, diagnosis, and awareness.
Kristýna Čillíková, representing ČAKO (Czech patient organisation), presented her poster, “Patient Organisations: Key Factor in Improving Quality of Care.” Kristýna highlighted the essential role patient groups play in driving change, sharing CAKO’s success in advocating for a national cardiovascular health plan in Czechia. She also showcased the Prague Declaration as a milestone in advancing FH pediatric screening, demonstrating how collaboration between policymakers, experts, and patient groups can lead to systemic improvements.
Magdalena Daccord, FH Europe’s CEO, delivered an insightful intervention on the foundation’s achievements in public health policy and advocacy. Her presentation highlighted key initiatives, including the FH Pediatric Screening Strategic Initiative with the Prague Declaration, the PERFECTO-FH research project, and the Lp(a) International Taskforce. Magdalena also spotlighted impactful campaigns like HoFH Awareness Day and the FCS 10g Fat Challenge, which address the unique needs of individuals living with rare lipid disorders.
19 Expert Interviews: Insights for the Community
The FH Europe booth, led by Elsie Evans, became a hub for expert engagement, conducting 19 exclusive interviews with global leaders in cardiovascular health, who offered insights into treatment adherence, nutritional interventions, and emerging therapies. Positioned next to the Lp(a) testing area, the booth welcomed many visitors who sought to better understand genetic lipid disorders and their cardiovascular risks.
Stay tuned as these interviews will be shared on our YouTube channel, offering the wider community access to expert insights and the latest scientific updates.
Moving Forward: Collaboration and Advocacy
ISA 2024 showcased the immense power of uniting patient voices with scientific expertise. From poster presentations to oral sessions and meaningful booth discussions, FH Europe ambassadors demonstrated the critical role of advocacy in advancing awareness, access to care, and research.
Through their stories and findings, our ambassadors made it clear: collaboration and action are essential to prevent the preventable. FH Europe remains committed to driving meaningful change for people living with familial hyperlipidemias.
Stay connected as we continue to work together for a healthier future.
We extend our heartfelt gratitude to everyone who made our participation possible. A special thank you to the IAS for providing us with the booth and awarding three travel grants, to Maxstention for generously producing the booth banners free of charge when our shipments were delayed, and to Arrowhead and Ultragenyx for their invaluable travel grants.