FH Europe Foundation

The European Network of Patient Organizations for inherited lipid conditions #FindFH #FindHoFH #FindLpa #FindFCS

[FH Europe Foundation @fhpatienteurope]

We’re stepping away from this platform.
This account will remain open, but no further posts will be shared here. Our work and community conversations continue on our website and other social media.
Join us there. #followus #keepintouch

[RARE Revolution Magazine® @RareRevolutionM]

“My friend passed away… because this treatment was neglected.”

Chyrel lives with #HoFH.

When funding stopped, life-saving care stopped too.

💬 “This is my right.”

Access to treatment shouldn’t depend on circumstance. 💙 @fhpatienteurope
#RareDisease #HealthEquity #PatientVoice

[RARE Revolution Magazine® @RareRevolutionM]

“I can’t move everyone to France.”

Maria lives with #HoFH—but access to treatment changed only when she moved.

⚠️ Care shouldn’t depend on where you live
💬 “Being healthy is not a luxury—it’s a necessity.”

We need equity in access. 💙 @fhpatienteurope
#RareDisease #HealthEquity #PatientVoice

[RARE Revolution Magazine® @RareRevolutionM]

I was born 2 years after my sister died… they knew I had the same condition.”

Joana lives with #HoFH—a rare genetic disease causing extreme cholesterol from birth.

💊 After 35 years, treatment changed her life.
🌍 But access came too late.

We need earlier diagnosis & equitable care. 💙 @fhpatienteurope
#RareDisease #PatientVoice

[RARE Revolution Magazine® @RareRevolutionM]

Treating #HoFH is complex.

💉 Apheresis: life-saving but demanding
💊 Medicines: effective but not always accessible

✨ But change is coming:
🧬 Earlier treatment
👶 Focus on children
📉 Better outcomes
https://t.co/bHbQLMKLr3

The future should be defined by possibility—not burden. 💙 @fhpatienteurope
#RareDisease #HealthEquity

[RARE Revolution Magazine® @RareRevolutionM]

The @FHEF_eu works to improve detection, treatment & care for inherited lipid disorders across Europe.

From #HoFH to #HeFH, #FCS & Lp(a), millions remain undiagnosed.

We need:
🧬 Earlier detection
💊 Better access to care
🌍 Stronger advocacy
https://t.co/5iLEcicj5I

Because early diagnosis changes lives. 💙 @fhpatienteurope
#RareDisease

[RARE Revolution Magazine® @RareRevolutionM]

For #HoFHAwarenessDay (May 4), we’re raising awareness of homozygous familial hypercholesterolaemia (#HoFH)—a rare, genetic condition causing extremely high cholesterol from birth.

📊 Affects ~1 in 160,000–300,000
⚠️ Leads to early heart disease—even in childhood

Early diagnosis saves lives. 💙
https://t.co/bHbQLMKLr3
@fhpatienteurope
#RareDisease #FH

[Global Heart Hub @GlobalHeartHub]

1 in 5 people worldwide have elevated Lipoprotein (a) or Lp(a).

💜 Today marks #LpaAwarenessDay, a global moment to raise awareness about Lp(a), a genetic risk factor for #cardiovascular disease that often goes undetected.

Because Lp(a) levels are inherited, a simple blood test taken once in a lifetime is enough to measure it.
Knowing your Lp(a) level can help you and your healthcare provider better understand your cardiovascular risk and take steps to protect your heart.

🩸One simple test. One time in your life. A lifetime of impact.

Let’s make Lp(a) awareness, testing and management a public health priority.

🌐Learn more: https://t.co/fjge1XQBlQ

#LpaAwarenessDay #KnowLpa #HeartHealth #CardiovascularHealth #FHEuropeFoundation

[International Atherosclerosis Society (IAS) @atherosociety]

Today is #LpAAwarenessDay!

#DYK? Only 1-2% of the population has had an Lp(a) measurement and therefore most of those with elevated concentrations do not know about their increased levels.

Use @fhpatienteurope's toolkit, which is available in 25 different languages, to join the conversation and raise awareness about #Lpa: https://t.co/VFZUeM0y2t

[Croí Heart & Stroke @CroiHeartStroke]

Croí as a member of @fhpatienteurope is proud to support #LpaAwarenessDay 26.

Globally, 1 in 5 people are estimated to have elevated levels of Lp(a), which is an independent cardiovascular disease (CVD) risk factor.

Talk to your healthcare provider about measuring your Lp(a).

[European Atherosclerosis Society @society_eas]

The discourse on Lp(a) among many stakeholders across the globe (medical societies, healthcare professionals, academics/researchers, patient organisations and life sciences industry) points to the urgent need to encourage a more systematic and structured approach to testing the population, following guidelines, to decrease the overall cardiovascular disease (CVD) risk / prevent CVD from high levels of Lp(a).

Recommendations and guidelines such as the EAS Lipoprotein(a) 2022 Consensus Statement underline that everyone should be tested once in a lifetime. #KnowLpa #LpaAwarenessDay @fhpatienteurope

[FH Europe Foundation @fhpatienteurope]

We’re stepping away from this platform.
This account will remain open, but no further posts will be shared here. Our work and community conversations continue on our website and other social media.
Join us there. #followus #keepintouch

[European Atherosclerosis Society @society_eas]

Calling our Danish members! This invitation is for you. Join us for the LCN webinar, Focused Update of the Guidelines, on February 18 at 15:15 CET. Don’t delay it and register now for this fantastic event, tailored to your local context: https://t.co/3un4Nq1TSU

[FH Europe Foundation @fhpatienteurope]

From big milestones to everyday wins, this year was one to remember. Proud of what we built—and what’s next.

#YearInReview #Milestones #Teamwork #Growth

[FH Europe Foundation @fhpatienteurope]

✨🎄 Merry Christmas & Happy New Year from FH Europe Foundation!
2025 was a year of impact, progress & community — made possible by you. Thank you for being part of our journey. 💛
Here’s to an even brighter 2026!
#MerryChristmas #HappyHolidays

[FH Europe Foundation @fhpatienteurope]

🇪🇺 Europe now has a Cardiovascular Health Plan — delivery starts now.
The EU Safe Hearts Plan is a turning point, recognising genetic & lifelong CV risk, incl. #FH and #Lp(a).
Act early to prevent the preventable.
🔗https://t.co/5TrakbQVg7

[FH Europe Foundation @fhpatienteurope]

Be part of history in the making and join the LIVE STREAM of the European Commission Statement at the European Parliament in Strasbourg.
📣 Presentation of the EU Cardiovascular Health Plan – “Safe Hearts Plan”
🕕 Live now! | 18:01–18:39 (CET)
📺 Watch: https://t.co/TjXd4tJt26

[FH Europe Foundation @fhpatienteurope]

On #UHCDay, we call for universal health coverage that guarantees early detection, equitable access to medicines, and financial protection for families living with inherited lipid disorders.
Access must never depend on income or postcode.#AccessToCare #HumanRightToHealth @UHC2030

[FH Europe Foundation @fhpatienteurope]

At #EACHSummit, Marius Geanta highlighted how CVD and cancer share major touchpoints—from prevention to survivorship. Experts stressed that collaboration isn’t optional. Oncology’s strong models can help shape better CVD care and inform the upcoming #EUCVDPlan.

[FH Europe Foundation @fhpatienteurope]

“Patient Voices in Action” at #EACHsummit stressed that Europe’s CV strategy must be shaped by those living with the conditions. Speakers highlighted fragmented info, need for cross-specialty care, and stronger prevention. Lived experience must guide policy. #patientsvoice