HoFH Patient Ambassador
Joined July 2009
- Tweets 691
- Following 293
- Followers 101
- Likes 38,387
53 Photos and videos
شيرَل 🇱🇧 retweeted
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
fhef.org/
Because early diagnosis changes lives. 💙 @fhpatienteurope
#RareDisease
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شيرَل 🇱🇧 retweeted
28 Mar 2025
New online! Scientific journey from PSCK9 discovery in familial hypercholesterolaemia nature.com/articles/s41569-0…
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شيرَل 🇱🇧 retweeted
4 May 2025
Today is #HoFHAwarenessDay
The landmark discovery of #PCSK9 by Prof. Marianne Abifadel & team nearly 20 years ago..
This remarkable story of discovery started with 3 families with high cholesterol and one brilliant young woman working on her PhD
@atherosociety @society_eas
28 Mar 2025
New online! Scientific journey from PSCK9 discovery in familial hypercholesterolaemia nature.com/articles/s41569-0…
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شيرَل 🇱🇧 retweeted
6 May 2025
What sets #homozygous familial hypercholesterolaemia apart is the FH-causing #gene from both parents. Let's raise awareness of #HoFH! Visit: fhef.org/hofh-awareness-day/ #Unite4HoFH #KnowHoFH #RareDisease #Maythe4thbewithyou #HoFHAwarenessDay @fhpatienteurope
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شيرَل 🇱🇧 retweeted
4 May 2025
Today is #HoFHAwarenessDay
#MayThe4thBeWithYou
What distinguishes #homozygous familial hypercholesterolaemia from the heterozygous form is the stronger presence of the FH-causing #gene, coming from both the mother and the father, which makes the condition way more severe, dangerous, and rare. This is why we need to raise awareness of #HoFH, and unite the community.
Today, we unite, we educate, and we elevate HoFH awareness like never before #Maythe4thbewithyou ⭐
Learn more: rb.gy/6g2xsn
#Unite4HoFH #KnowHoFH #RareDisease #HoFHAwarenessDay @fhpatienteurope
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شيرَل 🇱🇧 retweeted
25 Apr 2025
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شيرَل 🇱🇧 retweeted
4 May 2025
Today is #HoFHAwarenessDay 2025!
We proudly mark the 2 HoFH Awareness Day, “Galaxy Forces United: For #HoFH Awareness Day”
Read more➡️fhef.org/news/uniting-global…
Join the conversation, Share #Unite4HoFH.
May the force be with you today!
#MayThe4thBeWithYou #rarediseas
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شيرَل 🇱🇧 retweeted
19 Feb 2025
Despite the challenges he faces, Marc continues to fight for better awareness and support for kids like him.
Read his story: bit.ly/RDD-Marc
#TheRareWeShare is #MoreThanYouCanImagine #RareDiseaseDay #HoFH #FCS #FHEuropeFoundation @eurordis
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شيرَل 🇱🇧 retweeted
13 Feb 2025
🧬 #HoFH and #FCS are rare genetic conditions. HoFH: LDLR, Apo B, PCSK9 gene variants. Both parents have FH. FCS: Mutations in LPL, LMFI, Apo C-II, Apo A-V, GPIHBP1 genes. Together, we can raise awareness and advocate for better care. #TheRareWeShare #RareDiseaseDay @eurordis
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شيرَل 🇱🇧 retweeted
30 Dec 2024
🌟 Sisters Staying Active 🌟
🎄 Arwen & India Rijken stay active with skiing & dog walks!
⛷️ Arwen feels free skiing.
🐾 India walks her dog Mango during recovery.
💬 How do you stay active?
#FHEuropeFoundation #BeActive #FHEFCommunity
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شيرَل 🇱🇧 retweeted
30 Dec 2024
🥟 A Taste of Nepal 🎄
Athanasios Pallidis, living with HoFH in Greece, shares a Nepali chutney recipe – perfect with dumplings!
📋 Full recipe: linktr.ee/fhef_
#FHEuropeFoundation #EatHealthy #FHEFCommunity
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شيرَل 🇱🇧 retweeted
29 Dec 2024
💪 Stay Strong This Season
🎄 Chyrel Lichaa, living with HoFH in Lebanon, stays fit with her favorite workout!
🎥 Watch Chyrel’s demo & get moving!
💬 What’s your go-to workout?
#FHEuropeFoundation #BeActive #FHEFCommunity
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شيرَل 🇱🇧 retweeted
29 Dec 2024
🚴♀️ “From the saddle of a bike, all problems seem small.”
🎄 Kristýna Čillíková from ČAKO finds freedom and strength in cycling – it clears the mind and strengthens the heart.
💬 What outdoor activity lifts your spirits?
#FHEuropeFoundation #BeActive #FHEFCommunity
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شيرَل 🇱🇧 retweeted
25 Dec 2024
🎄 This season, we're sharing tips for a healthier holiday from our inspiring community.
Meet Elsie Evans, living with HoFH & managing our Ambassador Programme in the UK.
💬 What does self-care mean to you?
#FHEuropeFoundation #SelfCare #FHEFCommunity
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شيرَل 🇱🇧 retweeted
5 Dec 2024
Our Ambassadors shone at #ISA2024! 🌟
Led by Elsie Evans, our booth became a hub for interviews with global experts, sharing insights on FH, Lp(a), HoFH, FCS, and more. Grateful for this incredible opportunity! 🙌
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شيرَل 🇱🇧 retweeted
6 Dec 2024
Day 2 at #ISA2024 in Oman: FHEF Ambassadors shared experiences of living with high #Lp(a) via 3 posters. Elsie Evans highlighted #HoFH's burden & our Ambassador Programme.
@atherosociety
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شيرَل 🇱🇧 retweeted
10 Dec 2024
Jill Prawer raised #FCS awareness at #ISA2024 in Oman. FCS, a rare genetic lipid disorder, affects 1-2/million. Honored to share 2022 survey insights on its burden & quality of life. 🩶 #RareDiseases
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