FH Europe Foundation

The impact of #HoFH extends beyond health, affecting self-perception, education, and employment opportunities. Despite the challenges, many individuals and families affected by HoFH demonstrate resilience and adaptability. Empowerment through education, self-care practices, and advocacy can contribute to better psychosocial outcomes. Recognising these challenges underscores the importance of collective action in raising awareness and supporting research efforts. Though untreated HoFH may limit life expectancy on paper, it doesn't have to limit the impact of our compassion and advocacy. Join us and participate in our logo contest, a meaningful opportunity to contribute to the cause and make a positive difference in the lives of those affected by HoFH. Use your creativity to help change it! Bring joy and excitment to our world. Join the #logo competition and help unite the global HoFH community. https://lnkd.in/eb7cy7Wi #Unite4HoFH #RareDisease #UseHeart to #KnowHoFH and #FindHoFH #Maythe4thbewithyou #Impact #QoL

Managing #HoFH requires a life-long, multi-pronged #treatment approach beyond what is typically used for other forms of hypercholesterolaemia. This may include a combination of statins, esetimibe, PCSK9 inhibitors (for those with some LDLR residual activity), possibly LDL apheresis, a blood filtration procedure to remove LDL cholesterol, MTP inhibitors and ANGPTL3 inhibitors. Unfortunately, similar to many rare diseases, treatments for HoFH are often very expensive, not always reimbursed, or simply not available... and that holds for many people around the world. Without appropriate treatment, individuals with HoFH have a significantly reduced life expectancy compared to the general population due to the increased risk of cardiovascular events and complications from a young age. Treatment is more than just medication; it's evidence of the power of progress and perseverance. Let's complement treatment with empathy. Enter our logo contest to increase awareness for those managing HoFH. https://lnkd.in/eb7cy7Wi #Unite4HoFH #RareDisease #UseHeart to #KnowHoFH and #FindHoFH #Maythe4thbewithyou

While lipoprotein #apheresis used in the management of #HoFH can be highly effective in lowering cholesterol levels and reducing cardiovascular risk, it is an invasive procedure that requires specialised equipment and trained healthcare providers. It is usually conducted in specialised centers or hospitals with expertise in lipid management and apheresis therapy. The procedures can be physically and mentaly taxing, particularly for children due to their smaller sise, limited ability to sit still for extended periods, and potential fear or anxiety about medical procedures requiring big needles, machines and lasting for several hours at a time. Apheresis to be effective is required on a weekly of forthnighly basis, meaning children with HoFH miss out on school, while their carers or adult patients often compromise their time off for the regular hospital visits. Without appropriate #treatment, individuals with HoFH have a significantly reduced life expectancy compared to the general population due to the increased risk of cardiovascular events and complications from a young age. Bring joy and excitment to our world. Join the logo competition and help unite the global HoFH community. https://lnkd.in/eb7cy7Wi #Unite4HoFH #RareDisease, #UseHeart to #KnowHoFH and #FindHoFH #Maythe4thbewithyou

In exactly one month, on September 24, we will observe Familial Hypercholesterolaemia (#FH) Awareness Day! The issues of high #cholesterol will most likely affect all of us sooner or later. Yet, 1 in 300 people have high cholesterol from birth due to their #genetics inherited from their parents. This is why we have a dedicated day focusing on FH - FH stands for Familial Hypercholesterolaemia. In other words very high cholesterol in the blood runs in the family. The disorder affects families and causes serious heart health issues. Yet, those can be prevented. Follow us to #PreventThePreventable

Prevent the Preventable! The FH Awareness Day is coming up. And it is the 12th edition this year. On this occasion, we are thrilled to bring together an international community of patients, carers, ambassadors and advocates, healthcare professionals and industry partners to share what we have prepare to help raise awareness of the genetic disorder causing high cholesterol running in families which leads to premature and serious heart health issues. From year to year the community gets bigger and more involved. Great to see so many familiar and new faces! There is so much to celebrate, with the community which creates impact! From Austria, Croatia, Macedonia, to Canada, Singapore, and the Middle East! You too can get part of this campaign! Join us to raise awareness of familial Hypercholesterolaemia to #PreventThePreventable! Croí Heart & Stroke Charity Annie Faherty Costelloe Global Heart Hub Joanna Ten-Kate Karen McGarty Despina Zelianeou Cindy Evans Emma Print Inese Maurina Magdalena Daccord Albert Wiegman Manfred Huelber Spela Bovha Chyrel Lichaa Tavintharan Subramaniam Anna Andrea Böhm Kristýna Čillíková Gergely Jambrik Patsy Petrie Assoc CIPD Sandra Beltrán Iraqi Lipid Clinics Network (ILCN) Mutaz Al-Sabah Janine Shipton Marija Vavlukis Sharon Pek Željko Reiner Ivan Pećin Federica Fogacci Arrigo F.G. Cicero Olga Prof. Dr. Kordonouri Elisabeth Steinhagen-Thiessen Ken O'Reilly @patricia de luca Maria NASSIF

We are always excited to create a stronger impact, and how better to showcase this by inviting you to meet Joanna, a passionate advocate, embodies the spirit of Global Heart Hub (GHH). As a patient organisation, they tirelessly champion heart patients worldwide. 🌎❤️ Jonna, their dedicated Patient Community Engagement and Development Lead, has a powerful message to share. She sheds light on why a HoFH Awareness Day is crucial. 🗣️ Together, we’ll raise awareness, empower patients, and drive positive change. 🤝✨ Join us in amplifying awareness, fostering community, and making a difference for those affected by HoFH. Join our logo competition, #UseHeart and #Unite4HoFH #KnowHoFH to #FindHoFH Learn more: https://lnkd.in/eb7cy7Wi #RareDisease #LogoCompetition

Extremely high LDL cholesterol levels in people with HoFH build up in the artery wall and progress much earlier and faster than in HeFH. Plaque, hardening of the arteries, and atherosclerosis lead to premature health problems, which include heart attacks and strokes in children. Individuals with HoFH typically have untreated LDL cholesterol levels ranging from ~400 mg/dL (~10 mmol/L) to ~1000 mg/dL (~26 mmol/L). Which is roughly 4 to 10 times higher than the normal level. HoFH must be detected as early as possible before irreversible damage is done to the arteries. The good news is that HoFH can be effectively treated. Help to spread awareness and engage the community in genetic research and healthcare. https://lnkd.in/eb7cy7Wi #Unite4HoFH #RareDisease, #UseHeart to #KnowHoFH and #FindHoFH #Maythe4thbewithyou

Let's delve deeper into empathy with Chantale's poignant insights, which highlight the profound impact of understanding within our communities. 🌟 Chantale draws from her personal journey alongside a loved one battling Homozygous Familial Hypercholesterolaemia (HoFH), shedding light on the crucial role of empathy and open dialogue on this #HoFH Awareness Day. 💙 HoFH is a rare genetic condition characterised by extremely high levels of low-density lipoprotein cholesterol (LDL-C), often leading to premature cardiovascular disease. It affects approximately 1 in 250,000–360,000 individuals worldwide, underscoring the importance of awareness and support. Chantale's call to action resonates with the community's efforts to enhance understanding and compassion. By fostering a nurturing environment that acknowledges the emotional and medical challenges faced by those with HoFH, we can collectively drive meaningful change. 💫 Don't miss out on our logo contest, a chance to shine a spotlight on genetic conditions like HoFH! Learn more: https://lnkd.in/eb7cy7Wi #Maythe4thBeWithYou #UseHeart and #Unite4HoFH #KnowHoFH to #FindHoFH #RareDisease #LogoCompetition #CommunitySupport

Visible to the eye, xanthomas and xanthelasmas are typically the symptoms of excess cholesterol deposits that manifest in childhood. Xanthomas are fatty deposits under the skin, especially around the joints and tendons, and xanthelasmas are cholesterol deposits around the eyes. Concerned parents often seek help for their children at the dermatologist's instead of a lipidologist, while other people might worry it is contagious, leaving those affected physically and emotionally scarred. Xanthomas may cause a true burden - building up on the elbows and preventing the possibility to rest on them, or on the achilles tendon and hindering the possibility to walk, or in very intimate areas causing a lot of discomfort. Early recognition is crucial for timely and appropriate intervention. Use your creative powers to destigmatise HoFH. https://lnkd.in/eb7cy7Wi #Unite4HoFH #RareDisease #UseHeart to #KnowHoFH and #FindHoFH #Maythe4thbewithyou

And in Croatia we #Run4FH! High5... Low5... Give me 5! 👋 We are delighted to support our new Croatian Network Member in promoting the #Run4FH sport for all event. The run is planned around the FH Awareness Day and is a fantastic initiative promoting physical activity for all, raising awareness of high cholesterol, incl the genetic high cholesterol - HeFH and HoFH. So get ready for September 22, Sunday to run 5km for #FH. Well done Iva Prgomet and Ivan Pećin and Team and Partners! #croatia #croatia #knowfh #HoFH #HeFH #awareness #prevention #cholesterol