Celebrating 10 Years of FHSC
This year marks a special milestone — the 10th anniversary of the FH Studies Collaboration (FHSC). Over the past decade, FHSC has grown into a truly global network, driving awareness, research, and improved care for familial hypercholesterolaemia (FH).
FHSC supports national coordinating centers in their efforts to implement tailored treatment strategies aligned with their country’s unique requirements — all with the goal of reducing the global burden of FH. Each year, we present updates and new findings from these initiatives, reflecting the strength and diversity of our collaboration.
To mark this anniversary, we invited our National Lead Investigators to share their most recent highlights and reflections on FHSC’s journey. They were asked to respond to three key questions:
- How has being part of FHSC helped raise awareness and improve care for FH in your country or region?
- Which FHSC research milestone do you find most important — and why?
- What message would you like to send to the global community during FH Awareness Week?
During FH Awareness Week, we are proud to spotlight these achievements, alongside the successful activities and publications that emerge from our shared efforts. Below, you will find a collection of national FH activities, recent developments, and thoughtful perspectives from our network — together showcasing the impact of FHSC over the past ten years, and the vision that continues to guide us forward.
Greece
The Hellenic Familial Hypercholesterolemia Registry (HELLAS-FH) was initially established in 2016 under the patronage of the Hellenic Atherosclerosis Society. It is a nationwide initiative to systematically study, diagnose, and improve care for individuals with familial hypercholesterolemia (FH). The registry has continuously expanded and now encompasses 26 centers in seven major Greek cities and has recruited almost 4,000 patients representing almost 10% of Greece’s estimated FH population.
HELLAS-FH has entered a new phase of strategic growth and sustained engagement. Several new sites were incorporated in the last year to further expand national coverage and recruit new patients. Meanwhile, the registry has focused attention upon follow-up data and now more than 1,260 patients are now longitudinally tracked enabling dynamic, real-world insights into FH care across Greece. Ongoing efforts actively invite new centers to join, fostering inclusivity and ensuring broader availability to diagnosis and treatment.
The registry has also had a strong academic and clinical presence. HELLAS-FH representatives regularly participate in national and international congresses, raising awareness among healthcare professionals and patients. In addition, the team has participated in dedicated meetings with FH patient representatives to strengthen the patient voice and tailor outreach efforts. These activities reflect the registry’s dual mission of scientific excellence and public health advocacy.
The scientific output of HELLAS-FH is impressive with more than a dozen peer-reviewed articles spanning major subjects like LDL-C target attainment, cardiovascular burden, and metabolic comorbidities. Three recent publications in 2024–2025 explored novel associations between FH and hepatic parameters as well as the role of triglycerides and hypertension in atherosclerotic cardiovascular disease:
- The effect of lipid-lowering treatment on indices of MASLD in familial hypercholesterolemia patients
Boutari C. et al.
Published in: J Cardiovasc Med. 2024
doi: 10.1016/j.clnu.2024.10.020
- Exploring the Correlation Between Triglyceride Levels and Atherosclerotic Cardiovascular Disease in Adults with FH
Anagnostis P. et al.
Published in: J Clin Lipidol. 2025
doi: 10.1016/j.jacl.2024.12.017
- Beyond Lipid Levels: Unraveling the Hypertensive Factor in Familial Hypercholesterolemia. The HELLAS-FH registry
Antza C and Rizos CV. et al.
Published in: J Hum Hypertens (2025) (provisionally accepted)
Beyond research, the registry has advanced patient and clinician education. The official website (www.hellasfh.gr), social media accounts (@hellasfh on X and Hellas FH on Facebook), have aided in raising public and professional awareness and encouraging earlier diagnosis and optimal care pathways. HELLAS-FH also engages with health authorities to inform policy and strengthen national cardiovascular prevention strategies.
As FH Awareness Week is celebrated, the importance of early detection and timely treatment is underscored as life changing. Turning awareness into action can lead to a lasting impact for future generations. The HELLAS-FH registry remains committed to advancing equitable care, reducing cardiovascular risk, and improving the lives of individuals with FH.
Hungary
Iraq
2025 witnessed a remarkable progress in the field of Familial hypercholesterolemia (FH) awareness in Middle East and Africa, FH Symposia were arranged in Algeria, Kenya, Nigeria, Zambia, Zimbabwe, an important collaboration was made with colleagues in these countries about the necessity to establish specialized lipid clinics there to present unique health care services to FH patients in these countries, highlight the importance of early detection and proper treatment of this high risk genetic lipid disorder and the importance of using combination therapy as early as the diagnosis is made. Thanks for the great support presented by the International Atherosclerosis Society.
These collaborative efforts culminate into establishing the first ever lipid clinic in Algeria, Kenya, Nigeria , Zambia while we are finalizing the efforts in Zimbabwe and Tunisia. Thanks for the great support presented by the International Atherosclerosis Society.
The EAS-FHSC team is expanded by inviting new National Lead Investigators from the above countries to join.
Our First ever preventive strategy for FH ( The Premarital FH Screening Program, A New Hope for Families ) was accepted and presented as a scientific abstract in the annual congress of the American Society of Preventive Cardiology in Boston, US (August 1-3) , thus accepted for publishing in the AJPC .
Lp (a) testing was made accessible for the first time for FH patients in Iraq in the health institutions of the Health authority and Medical education in Karbala city, Iraq.
FHSC National Lead Investigator Mutaz Al-Sabah
Malta
Portugal
FHSC National Lead Investigator: Prof Mafalda Bourbon
Saudiarabia
FHSC National Lead Investigator: Dr Fahad Alnouri
Familial hypercholesterolemia in pregnancy
Fahad Alnouri, Frederick J Raal
Published in: Current Opinion In Lipidology Journal, 2025 Jun 1;36(3):138-144
doi: 10.1097/MOL.0000000000000980
