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.

"One Galaxy, One Heart: UNITE FOR HoFH AWARENESS" - The theme

The slogan captures the essence of solidarity and unity in the fight against Homozygous Familial Hypercholesterolaemia while incorporating the expansive theme of the Star Wars galaxy, a worldwide pop culture phenomenon. It emphasizes the importance of collective action and support for individuals affected by HoFH, and all others in the galaxy of FH - from family members and friends, advocates to medical community, policymakers and many more.

Here at FH Europe Foundation, we've been working tirelessly to prepare for this important event. From educational resources to community outreach initiatives, we are committed to making HoFH Awareness Day a resounding success.

But we can't and don’t want to do it alone! And this is why we are thrilled to share that we have united with many organisations around the world, individuals and of course families affected with HoFH!

"The Rebel Partners" - The supporters

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.

Download the Toolkit
*Once you click on Download the Toolkit button, it will automatically download a zip folder with the following materials onto your device.

3. Train Like a Jedi

On Thursday, 25 April 2024, we hosted 2 virtual workshops to share the information about the campaign. To watch the recording of one of them click here

Don’t miss the videos prepared by the international community explaining, in their very own words and languages, why we need an HoFH Awareness Day.

But there is more. The HoFH Treatment and Care Trilogy. Together with subject matter experts we are holding 3 special webinars exploring the  knowledge needed to combat HoFH.

More information coming up shortly.

4. Unite Your Galactic Community

Activate your creative soul and design a visual which could become a global logo of the day moving forward. With a special logo competition, we ask anyone out there to help us unite!

One Galaxy, One Heart, get creative and help us UNITE!
Learn More

"Allies of the Force" - The sponsors

HoFH Awareness Day 2024 launch activities are supported by grant funding from
If you would like to join the Allies of the Force and support the HoFH Awareness Campaign, please contact Grainne Crowley on gc@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 2024.