Published: November 19, 2024

Leading the Dialogue: FHEF Ambassadors Share Their Expertise at ISA 2024

Uniting Science and Advocacy in Oman

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.

Amplifying the Patient’s Voice

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.

  • Chyrel Lichaa, a patient ambassador and founder of FH Lebanon, living with Homozygous Familial Hypercholesterolaemia (HoFH), will present a poster - “Launch of the First HoFH Awareness Day: Addressing Unmet Needs”. In addition, she has been invited to give two oral presentations on the topic of “Role of Patient Advocates in Securing Apheresis Access in Lebanon” and “Urgent Need for the First FH Patient Organisation in the Middle East”.
  • “Reduced QoL and Economic Burden Associated with HoFH: Patient Survey “and “Empowering Advocacy through Education: The FH Europe Foundation Ambassador Programme” are the topics of two posters which will be presented by Elsie Evans.
  • “Global Journey of a Person Living with FCS/Severe HTG “is an oral presentation topic, which will be delivered by Jill Prawer, founder of Action FCS in the UK, a patient ambassador living with Familial Chylomicronaemia Syndrom (FCS), a rare familial lipid condition.
  • “Patient Organisations: Key Factor in Improving Quality of Care “is a poster topic which will be presented by Kristýna Čilliková, representing ČAKO the Czech patient organisation and member of FHEF.
  • A very personal topic will be the focus of Marc Rijken’s oral presentation “From a Healthy Citizen to an Lp(a) Patient Advocate”, when he will share how his 10 years journey to a diagnosis of elevated Lp(a) with two heart attacks made him become an international ambassador.
  • And finally, Tobias Silberzahn from Germany living with elevated Lp(a) will present on Lp(a) International Taskforce: An Innovative, Multistakeholder Approach to Cardiovascular Health, of which he is a member.

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.


FHEF Booth at IAS - Bringing Advocacy to Life

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.

Why It Matters

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.

Looking Ahead

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

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