Across Europe and beyond, FH Europe Foundation (FHEF) Patient Ambassadors are increasingly taking their place on international stages—bringing the lived experience of inherited lipid disorders to scientific congresses, policy discussions, industry forums and educational events. Their voices are helping to shape conversations, influence decisions and ensure that patients remain at the heart of research, innovation and healthcare. Only this month, our Ambassadors presented at two international conferences, a trilogy of webinars, and an industry meeting.
At the HTAi 2026 Annual Meeting in Istanbul, Marc Rijken from the Netherlands represented the patient perspective as a member of the Lp(a) International Task Force. Speaking during a session on implementing Lp(a) testing, Marc reminded delegates that behind every health technology assessment, reimbursement decision and policy recommendation is a person, a family and a life that may be profoundly affected. His contribution demonstrated why meaningful patient involvement is essential when shaping future health systems.
At Lp(a) Update 2026 in Munich, organised by the German Society for Lipidology (DGFL – Lipid-Liga), FHEF Ambassadors took centre stage in the opening session. Tobias Silberzahn (Germany) and Corinna Zangerl-Falkeis (Austria) shared their very different journeys with elevated Lipoprotein(a), highlighting the importance of early detection, health literacy, shared decision-making and personalised care.
Patient voices were equally powerful at an industry meeting in Athens, where Helga Davidson from Scotland shared her experience of living with familial chylomicronaemia syndrome (FCS). Speaking openly about her hopes, dreams, and the everyday challenges of living with a rare disease, Helga reminded participants that behind every diagnosis is a person striving to live a full and meaningful life.
Throughout the "A New Hope: HoFH Webinar Trilogy," patient ambassadors worked alongside internationally recognised clinicians, researchers and healthcare professionals to ensure that lived experience remained central to every discussion. In the first webinar, Chyrel Lichaa (Lebanon) moderated the session on early diagnosis, joined by Athanasios (Thanos) Pallidis (Greece), who shared the importance of timely diagnosis and family-centred care. The second webinar explored new treatment possibilities, moderated by Elsie Evans (UK/South Africa), with Olivia de Graaf (the Netherlands) sharing her personal experience of living with HoFH and the realities of evolving treatment options. The trilogy concludes with Joanna Kacprzak (Poland), who brings the perspective of patients and families, highlighting the emotional, psychological and practical realities of living with HoFH every day.
Together, these ambassadors are demonstrating that patient engagement is no longer an afterthought—it is an essential part of advancing research, improving healthcare and shaping policies that truly meet patients' needs. Whether speaking at international scientific congresses, contributing to health policy discussions, participating in industry meetings or educating healthcare professionals, every presentation, every panel discussion and every personal story helps build understanding, strengthen collaboration and inspire change.
At FH Europe Foundation, we are immensely proud of our Patient Ambassadors. Their courage, dedication and willingness to share their lived experiences continue to influence clinicians, researchers, industry leaders, policymakers and fellow patients across the world. By ensuring that the patient voice is seen, heard and valued, they are helping to build a future where everyone living with familial hypercholesterolaemia, elevated Lipoprotein(a), homozygous familial hypercholesterolaemia and familial chylomicronaemia syndrome can benefit from more person-centred, equitable and effective care.
Interested in becoming a certified Ambassador? Contact our team to learn about the next training programme.
Email: Elsie@fheurope.org