HoFH Awareness Day

HoFH (Homozygous Familial Hypercholesterolaemia) affects individuals from birth and significantly increases the risk of heart disease already early in life. Despite its severity and the urgency to act, HoFH remains largely underdiagnosed and misunderstood. Even more surprisingly as HoFH occurs in families affected with heterozygous FH (HeFH), a very common inherited high cholesterol disorder and a cardiovascular disease (CVD) risk factor.

With heterozygous FH (the common one) affecting 1person in 250–300, and homozygous FH (the rare and severe one) affecting 1 person in 250,000–360,000, it is estimated that one child with HoFH is born a day somewhere in the world. In some populations, such as French Canadians, Afrikaners in South Africa, or Christian Lebanese, HoFH prevalence may be at least 10-fold higher due to founder effects. Yet, the early detection, correct diagnosis and treatment initiation are a huge challenge, with only 10% of people with FH are currently diagnosed and even less are optimally treated, leaving those affected at a high risk of series health consequences early in life.

That's why it's crucial for us to come together to raise awareness and support those living with this condition. For that reason, we are excited to launch the 1st HoFH Awareness Day. And to make it even more memorable we have chosen a special day and a special slogan!

"May the 4th" - The date

The phrase "May the 4th" resonates with "May the Force be with you," an iconic line from the global cultural phenomenon, Star Wars. This connection has made the date a playful nod to the series. Coinciding with HoFH Awareness Day, "May the 4th" underscores the importance of resilience and strength, echoing the themes of overcoming adversity found in Star Wars, and highlighting the courage needed to confront health challenges.

"Galaxy Forces United: For HoFH Awareness Day" - The theme

Just as galaxies consist of countless stars working together to create something vast and powerful, Galaxy Forces United symbolises the collective strength of the HoFH community. Despite geographical distances and individual challenges, we are all part of an interconnected force working toward the same goal—raising awareness, driving support, and advancing treatment for HoFH. 
 
Inspired by the expansive Star Wars universe, this theme highlights the importance of unity and solidarity in the fight against HoFH. From patients and families to advocates, healthcare professionals, and policymakers, everyone has a role in this mission.
 
At FH Europe Foundation, we are committed to making HoFH Awareness Day a resounding success through educational resources and global outreach.
 
But we can’t—and don’t want to—do it alone!
 
That’s why we’ve united with organisations, individuals, and families worldwide to shine a light on HoFH. Together, we are a force to be reckoned with!

Get Engaged

Now, we need YOU to get ready to channel your inner Jedi because HoFH Awareness Day is approaching at light speed! May the 4th is when our galactic celebration will take place, starting in 2024. So, it's time to summon the Force and unite against the dark side of HoFH.

1. May the Facts Be with You 

Please share essential information about HoFH with your fellow rebels, spread the word about this rare but serious condition and help educate others about its impact on physical and mental health.
Read more about HoFH

2. Embrace the Power of Social Media

Download our multilingual toolkit to harness the force of social media to amplify our message. Share the Star Wars-touched posts and graphics related to HoFH to reach a wider audience across the galaxy. To unite us always use the hashtag #Unite4HoFH. You might also consider #UseHeart#FindHoFH and #KnowHoFH.

3. Train Like a Jedi - Coming Soon!

HoFH 360°: A New Hope for Every Generation 
 
Join us for an exclusive webinar trilogy exploring the lifelong journey of living with HoFH. From family planning and early diagnosis to navigating adulthood and planning for the future, each episode will feature expert insights, personal stories, and discussions on the evolving landscape of HoFH care.  
 
Stay tuned for confirmed dates and be part of these essential conversations!

"The Force of Knowledge" - The Resources

Navigating HoFH
The trio of treament in HoFH
The golden stardards in HoFH
HoFH: genetics and the novel therapies
Living with HoFH
My life with FH
Latest updates and unmet needs
Make it or break it

"Allies of the Force" - The sponsors

If you would like to join the Allies of the Force and support the HoFH Awareness Campaign, please contact Magda on md@fheurope.org . Remember, the Force is strong when we stand together. Let's use our collective power to shine a light on HoFH and make a positive impact on those affected by this condition.
This content has been developed by our Patient Ambassadors and reviewed by Prof. Albert Wiegman. Last review April 2025.