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"We place life’s bets by countless calculations of probability, conscious and unconscious, only to discover over and over how short they fall of the wildest reaches of the possible, which always includes but exceeds the probable. It helps to remember that we ourselves are children of improbability, that everything we treasure exists not because it had to, not because it was likely or necessary, but because the universe took a gamble against the staggering odds otherwise." by Maria Popova in The Marginalian
Today, May 4th, marks HoFH Awareness Day, a moment to shine a light on a rare and often overlooked condition, and on the people living with it every day.
Homozygous Familial Hypercholesterolaemia (HoFH) presents significant challenges. From an early age, patients face extremely elevated LDL-C levels and a high risk of premature cardiovascular disease. Diagnosis can be delayed, treatment pathways complex, and access to specialised care and therapies uneven.
But the landscape is evolving.
New and updated dyslipidaemia guidelines are providing clearer, more actionable direction for clinicians, supporting earlier diagnosis, more structured management, and more ambitious LDL-C targets for those at highest risk. At the same time, advances in therapy—from combination drug regimens to innovative targeted treatments—are expanding what is possible in HoFH care.
For patients, this progress matters. It means more options, more clarity, and greater potential to improve long-term outcomes.
As we mark HoFH Awareness Day, it’s important to acknowledge both sides of the story: the very real challenges patients continue to face, and the meaningful strides being made in care. Continued awareness, equitable access to therapies, and implementation of evolving guidelines will be key to turning progress into impact.
Above all, this day is about the people living with HoFH, their resilience, their needs, and the collective effort required to support them.
#Unite4HoFH #KnowHoF
#HoFH #HoFHAwarenessDay #HeartHealth #GeneticCondition #RareDiseases
European Atherosclerosis Society (EAS) & Congress
International Atherosclerosis Society - IAS
Rare Diseases International
Global Heart Hub
Iraqi Lipid Clinics Network
@European Alliance for Cardiovascular Health (EACH)
