Amsterdam, Netherlands, 04.05.2025: For the second consecutive year, the FH Europe Foundation (FHEF) marks May 4th—a date globally recognised for the iconic phrase “May the Force Be with You”—as HoFH Awareness Day. In 2025, the campaign embraces the theme “Galaxy Forces United: For HoFH Awareness Day”, taking the mission to new heights through powerful collaboration with our network partners, international ambassadors, patients, and their families. Together, we are building a global movement rooted in community, education, and awareness—uniting efforts to shed light on Homozygous Familial Hypercholesterolaemia (HoFH), amplify patient voices, and strengthen advocacy for early diagnosis, equitable care, and informed support at every stage of life.
Homozygous Familial Hypercholesterolaemia (HoFH) is a rare and severe genetic form of familial hypercholesterolaemia (FH) that causes extremely high levels of LDL cholesterol from birth and affects entire families across generations. It develops when a child inherits two copies of an FH-causing gene—one from each parent, both of whom typically have heterozygous FH (HeFH). While HeFH affects roughly 1 in 300 people worldwide—more than 30 million individuals—HoFH impacts approximately 1 in 300,000 and can lead to early-onset cardiovascular disease (CVD), including heart attacks, strokes, or sudden death, often during childhood or adolescence. Despite its serious and life-altering consequences, HoFH remains significantly underdiagnosed and misunderstood, resulting in avoidable complications and immense emotional and psychological strain on affected individuals and their families, already affected with HeFH. Today, it is estimated that only 10% of people living with FH globally have been diagnosed.
HoFH Awareness Day was officially launched on May 4th, 2024, with the incredible support of leading international organisations committed to heart health and cholesterol disorders. Among the first to rally behind the cause were the World Heart Federation, International Atherosclerosis Society, European Atherosclerosis Society, Global Heart Hub, the Iraqi Lipid Clinics Network, and the Family Heart Foundation in the United States. Their collective endorsement helped spark a global conversation about HoFH—one grounded in awareness, education, community-building, and the urgency of preventing preventable heart disease.
“This campaign embodies the power of unity across galaxies—metaphorical and real,” said Magdalena Daccord, CEO of FH Europe Foundation. “We are building momentum for a future where HoFH is recognized early, managed effectively, and never ignored.”
Now in its second year, the campaign continues with renewed commitment from key partners, joined by new supporters who recognise the importance of early detection and equitable care for people living with HoFH, a CVD risk factor and a rare disorder. In 2025, the European Alliance for Cardiovascular Health and Rare Diseases International have expressed their readiness to join the mission, further strengthening this growing coalition of advocates, clinicians, and affected families working together to create lasting change.
This year marks a turning point for HoFH awareness, as advocacy efforts for cardiovascular and rare diseases gain traction at both European and global levels. The Council Conclusions on cardiovascular health (CVH) and the European Parliament’s recent support for a European Action Plan on Rare Diseases highlight growing political will to address disorders like HoFH. Globally, Rare Diseases International is championing a World Health Assembly Resolution on Rare Diseases, aiming to improve diagnosis, access, and care worldwide—an effort supported by FHEF. Meanwhile, innovative treatments are now being approved for younger children, and more personalised therapies are in development, offering new hope for early and effective intervention.
“With more effective treatments on the horizon, we must ensure early and equal access to care,” added Prof. Albert Wiegman, renowned paediatric cardiologist. “Raising awareness is our first line of defence. Patients with HoFH, urgently need intense treatments to prevent CVD. There is no time to lose!”
At the heart of this progress is a stronger, more empowered network of HoFH Ambassadors globally, whose lived experience and advocacy are helping to build awareness, influence policy, and support others around the world. And while more ambassadors get involved, they also receive the important backing of their communities, families and even employers with raising awareness of this very serious inherited LDL cholesterol disorder.
In 2025, the HoFH Awareness Day campaign, lasting across May and June, brings fresh energy with inspiring, accessible initiatives designed to educate, empower, and unite. With the support of our incredible community, the campaign’s official awareness toolkit has been translated into record 19 languages, enabling outreach and education across the globe—complemented by live activities led by ambassadors, clinicians, researchers, and industry partners in various regions. Launching in May, the webinar trilogy – HoFH 360°: A New Hope for Every Generation, explores the HoFH journey from family planning, though childhood to adulthood, featuring expert insights, lived experiences, and practical guidance at different stages of life. Each episode is designed to spark conversation, answer real questions, and strengthen the global HoFH community. On May 6, in collaboration with the Rare Revolution Magazine, the campaign will enjoy “Takeover Tuesday”, spotlighting HoFH through a social media takeover, sharing patient voices, expert commentary, and advocacy stories—all curated by and for the community. To connect the global HoFH community, FHEF is relaunching its logo design competition to establish a unifying symbol for HoFH Awareness Day. Artists and supporters of all ages are invited to contribute their vision. The winning design will be unveiled at the Annual Network Meeting in November 2025.
HoFH Awareness Day 2025 coincides with the opening of the European Atherosclerosis Society (EAS) Annual Congress on May 4th in Glasgow, offering a timely and powerful platform to amplify our message. We call on all our friends and allies to stand with us on May 4th by sharing on social media and using the #Unite4HoFH hashtag.
May the 4th be with you!
For full details and ways to participate, visit our HoFH website, follow the campaign on social media using #Unite4HoFH and #GalaxyForcesUnited.
FH Europe Foundation would like to acknowledge the Allies of the Force, the industry partners, for their continued support of the HoFH Awareness Day campaign: Arrowhead Pharmaceuticals and Chiesi Global Rare Diseases. Their commitment helps drive our shared mission of HoFH awareness, education, and equitable care forward.
Press inquiries and partnership opportunities:
maja@fheurope.org
www.fheurope.org
About FH Europe Foundation
The FHEF is the only not-for profit, network of patient organisations across Europe dedicated to preventing the consequences of inherited dyslipidaemias, particularly Familial Hypercholesterolaemia (FH) and its rare form Homozygous FH (HoFH), elevated Lipoprotein (a), and Familial Chylomicronaemia Syndrome (FCS). The Network, formed in March 2015 currently includes 34 organisations across 29 European countries and one global organisation.
Social media:
Instagram: @fh_europe
Facebook: FH Europe – The European FH Patient Network
LinkedIn: FH Europe Foundation
About HoFH
HoFH is the rare and the most severe form of Familial Hypercholesterolaemia (FH). Untreated, HoFH often causes heart disease (heart attacks and aortic valve disease) beginning in the early childhood. It is estimated to affect as many as 1 in 300,000 people all over the world. People with HoFH typically have LDL cholesterol levels significantly higher than 400 mg/dL, compared to normal levels of less than 100 mg/dL. This excessive buildup of LDL cholesterol can lead to the early onset of cardiovascular disease, including heart attacks and strokes, even death, as early as the first decade of life. The burden of HoFH is significant and multifaceted, impacting various aspects of life, reaching far beyond physical health. Treatment for HoFH typically involves aggressive cholesterol-lowering therapy, including a combination of cholesterol-lowering medications, LDL apheresis, dietary modifications, and as measure of last resort, liver transplantation. Like with any rare disease – treatment can be expensive or simply not available, leaving many who need it at a serious risk.