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. 

With heterozygous FH (the common form of FH) affecting 1 person in 250–300, and homozygous FH (the rare and severe one) affecting 1 person in 250,000–360,000, it is estimated that every day, somewhere in the world, one child is born with HoFH. 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 currently diagnosed and even less 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. 

"May the 4th" - The date

"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.

"HoFH Awareness Day: A new hope" - The 2026 theme

This theme reflects the evolving landscape of HoFH care, highlighting the transformative impact of new global guidelines, innovative therapies, and early intervention. It symbolises the promise and optimism for patients and families living with this rare condition, showing that progress in science is translating into real-life improvements and hope for the future.
 
This year’s focus emphasises the importance of early diagnosis, paediatric care, and the newest treatment options, ensuring that children with HoFH could access the therapies that have the potential to change outcomes and improve quality of life. At the same time, the theme acknowledges the lived realities of patients and families, recognising the emotional, practical, and psychological challenges that accompany HoFH
 
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!

"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. 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

Access our multilingual toolkit via SharePoint and help amplify the message of HoFH Awareness Day across your networks. By sharing campaign visuals and messages, you can help reach a wider audience and strengthen our global voice. To unite us always use the hashtag #Unite4HoFH. You might also consider #KnowHoFH.

The toolkit is currently being updated, and already includes:

  • Logo
  • Virtual background
  • Email signature visual
  • Social media profile photo frame template
  • Countdown visuals 
  • Key messages 

Key messages and countdown visuals are available in many languages.
Not available yet? Please help us with the translations and contact marina@fheurope.org
Thank you for your support.  

*This link will take you directly to a folder with downloadable campaign materials ready for use.
The key messages included in this toolkit have been reviewed and validated by clinical and subject-matter experts. To ensure accuracy and consistency, these messages should not be modified.

If you wish to develop your own content or messaging, you are welcome to do so. In such cases, you may use the “HoFH Awareness Day” logo. However, the FHEF logo and the logos of campaign supporters must not be used in connection with independently created materials.

If you are interested in adapting or co-creating assets, we encourage you to contact us. We are happy to collaborate to ensure that all communications remain accurate, aligned, and impactful.

"The Force of Knowledge" - 2025 Webinars

"The Force of Knowledge" - 2024 Webinars

"The Force of Knowledge" - The Resources

Navigating HoFH
Living with HoFH
My life with FH
Latest updates and unmet needs
Make it or break it

"Allies of the Force" - The sponsors

HoFH Awareness Day 2026 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 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.