May the 4th is special! Not only because it is the official day of celebration for Star Wars fans around the world but, this year, it marks the launch of the first awareness day for Homozygous Familial Hypercholesterolaemia (HoFH).
HoFH is a rare and severe genetic disorder characterised by extremely high levels of LDL cholesterol from birth. It affects approximately 1 in 300,000 individuals worldwide. The excessive buildup of LDL cholesterol can lead to the early onset of heart health issues, coined with the term cardiovascular disease (CVD), including heart attacks and strokes, even death, as early as the first decade of life. Due to its rarity, the situation of people with HoFH is often overlooked, which does not do justice to the gravity of the condition and the challenges patients with HoFH and their families face. Nor is the importance of early diagnosis and immediate treatment of people with HoFH widely understood amongst the medical and lay public.
With the theme One Galaxy, One Heart: UNITE FOR HoFH AWARENESS the community hopes to evoke the spirit of unity, solidarity, and collective action in raising awareness about HoFH. The occasion has already activated global stakeholders and supporters operating in the space of cardiovascular health, inherited lipids, patient advocacy and more. Motivated by a shared desire to shine a spotlight on what it means to live with HoFH and to prevent the preventable, the FH Europe Foundation and the international HoFH Patient Ambassadors and their families, invited to join forces with the World Heart Federation, the European Atherosclerosis Society, and the International Atherosclerosis Society, Global Heart Hub, the Iraqi Lipid Clinics Network, the Family Heart Foundation and many more organisations and individuals in the campaign.
“The patients’ community chose May the 4th given its association with the Star Wars phrase ‘May the Force be with you.’ Just as the characters in Star Wars bond together to overcome challenges, people and families affected by HoFH can find strength and support in their community.” said Elsie Evans, FH Europe Foundation's Education Project Manager and an HoFH Ambassador.
The campaign will raise awareness of the need to urgently improve early detection with increased systematic childhood screening programs, ensure correct and timely diagnosis combined with equitable access to treatment and genetic counselling for those affected with this rare and severe disorder.
Prof. Albert Wiegman, from the Netherlands, the world expert in treating children with HeFH and HoFH, is excited about the new era “Effective treatments to lower the extremely high blood cholesterol to normal levels are being developed or improved and approved for children. But …while those, who are in the greatest need of these treatments are being detected in one country, in another country they are hardly diagnosed or far too late. Unthinkable but true. There is urgency to find them early and to treat them well. It will add decades of healthy life years. Creating awareness is vital!”
According to Chyrel Lichaa, HoFH Ambassador from Lebanon and the Project Manager for the campaign, “As HoFH patients, we should not have to let healthcare uncertainties dictate how we lead our lives or stand in the way of our happiness. True care extends beyond medication; it embraces our emotional and mental well-being. We deserve better than to be at the mercy of treatment availabilities. Unfortunately, some of us face the challenges and limitations of having HoFH daily.”
"We are thrilled to announce the launch of HoFH Awareness Day," said Magdalena Daccord, CEO, FH Europe Foundation. “By uniting, we gain more visibility and a stronger voice. We can inform the public, medical community, and policymakers on how to diagnose early and support better people with HoFH and their families. We also want to draw attention to the fact that while HoFH can be diagnosed and successfully managed, due to the complexity of care, low level of awareness about FH in general and other factors including cost of treatment, there is huge variation in detection and the level of care around the world.”
In effort to raise awareness and to unite the global HoFH community, we are delighted to announce a dedicated logo competition. The idea behind it is simple. An open invitation to the public to create a logo for the community and the day will stimulate a participatory element of the campaign. The possibility to participate will be open till September 24th, which marks the FH Awareness Day, building a bridge between the two important dates.
Let's dive deeper into the heart of the campaign, the voices of international Ambassadors and advocates as they share their powerful messages on why HoFH Awareness Day matters. We thank the community from around the world for being part of this galactic initiative! As the messages keep pouring from all corners of the galaxy, we wish to express heartfelt thanks to patients, families, friends, doctors, nurses, pharmacists and many many more supporters whether from Europe, South Africa, Tanzania, Ethiopia, to Lebanon, Syria, Iraq, Afghanistan, Pakistan, as far as Australia, the US & many more for sharing their video messages. We keep posting them on our YouTube channel. Today, we invite you to meet Marc, Michelle, Prof. Wiegman, and Elsie.
Marc Salloum: 13 Year old boy living with HoFH from Lebanon
Marc decided to take part to tell his story. As a consequence of HoFH, Marc has visible cholesterol deposits under his skin. Unfortunately, children and adults around him are unaware of this rare disorder. They often make hurtful comments, which upset Marc. Here is why he thinks a dedicated HoFH Awareness Day is needed.
Michelle Watts: an Ambassador for HoFH and HeFH from the USA
She is also a caregiver for her daughter with HoFH. Michelle over the years has been involved in awareness raising about rare and severe lipid disorder. Here is why she thinks a dedicated HoFH Awareness Day is needed.
Prof. Albert Wiegman: Paediatric cardiologist from the Netherlands
Prof. Wiegman has been treating families with FH (HeFH and HoFH) for over 3 decades. Here is why he thinks a dedicated HoFH Awareness Day is needed.
Elsie Evans: an Ambassador for HoFH from South Africa
Elsie is an Education Manager with FH Europe Foundation and HoFH Ambassador, she originally comes from South Africa and she currently lives in the UK. Throughout the past few years, she's been advocating for stronger support for families affected by HoFH and promoting research about HoFH in adults. Here is why she thinks a dedicated HoFH Awareness Day is needed.
Here's how you can join the rebellion and make HoFH Awareness Day an event to remember:
For more information on how to support this campaign and to get involved here or follow us on social media using the hashtag #Unite4HoFH
HoFH Awareness Day 2024 activities are supported by funding from Arrowhead Pharmaceuticals, Chiesi, Regeneron, and Ultragenyx.
For media inquiries, please contact: 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.
HoFH Awareness Day campaign kicks off with plenty of surprises in store. Stay tuned for more updates. Together, we'll triumph over the dark side of HoFH!
