We aim to improve the lives of Hypertrophic Cardiomyopathy (HCM) patients and families in the EU via innovative projects, information, and psychological care.
Vienna, Austria
Joined December 2023
- Tweets123
- Following121
- Followers69
- Likes121
We started exactly 3 years ago and, looking back, we are very proud of what we have achieved.
Thanks a lot to everyone who supports our cause - a longer and better life for all European HCM patients! This fundraiser goes to their psychological support.
donorbox.org/hcm-patient-fou…
Episode 12 of the HCM Pills webcast deals with health-related law in the EU, policies and guidelines - and there is no one better to explain how this works for HCM patients than Dr. Elena Arbelo @arbelo_e
Watch it here:
👇👇👇
youtube.com/watch?v=E7qE6PVM…
🫀🫀🫀
52
It is great to see new initiatives providing quality information about cardiomyopathies. Listen to the first episode of @libbyjarman's new podcast. youtube.com/@CardiomyopathyC…
42
Chcemy dotrzeć do jak największej liczby pacjentów w Europie, dlatego ciągle dodajemy nowe języki do naszej strony. Właśnie uruchomiliśmy wersję polską, dzięki czemu liczba języków wzrosła do 8! I tak, włożyliśmy w to sporo ręcznej pracy. 😊
hcmpatient.eu/pl
33
Summer is officially here! ☀️ ⛱️ 🕶️
In this blog post, Francesca Musso shares her personal experience of living with HCM during the summer and the strategies that help her manage symptoms while continuing to enjoy daily life.
hcmpatient.eu/blog/living-wi…
23
Episode 11 of the HCM Pills webcast is online! In it we discuss with Assoc. Prof. Michelle Michels the impact of HCM on the psychological health of patients, the uncertainties they face and the best ways to cope with them.
Link to full episode in the first comment
👇 👇 👇
1
25
Thanks for watching, commenting, subscribing and sharing!
Link to full episode
youtu.be/megEoO9U2Tk
14
We are very happy to see positive data from the Phase II trial of @EdgewiseTx's EDG-7500, a cardiac sarcomere modulator, for both obstructive and non-obstructive HCM patients. We do hope to see soon a Phase III trial which may ultimately bring a new weapon against HCM.
Today we announced positive top-line data from 12-week Phase 2 CIRRUS-HCM trial with EDG-7500 in obstructive and nonobstructive Hypertrophic Cardiomyopathy (HCM).
Read the press release: investors.edgewisetx.com/new…
45
The European Coalition for Inherited, Congenital and Sudden-Death-Related Cardiovascular Disease Prevention submitted feedback via @ERNGuardHeart to the @EU_Commission's call for evidence to organise evidence-based screening for cardiovascular diseases.
ec.europa.eu/info/law/better…
21
Excellent news for non-obstructive HCM patients! @Cytokinetics just announced positive topline results from their ACACIA-HCM study, meeting both primary endpoints. Congrats for everyone involved!
ACACIA-HCM trial topline results - aficamten in nHCM. Incredibly proud and thankful to our patients and team for their commitment and hard work. This represents the first effective treatment for patients with nHCM. looking forward to seeing the full results.
#CardioTwitter
Episode 10 of the HCM Pills webcast is here! 📽️🎞️
In it we talk to @jodieingles27 about all aspects of genetic counselling in HCM patients.
Thanks for watching, commenting and sharing!
#HCM #Genetic #Counselling
youtu.be/prdiXSl4evU
42
More good news for #HCM patients! The SCOUT-HCM study for mavacamten in adolescent patients with obstructive HCM showed a significant reduction in obstruction (-48.5 mmHG) with no increase in adverse effects. Important step for the kids! @bmsnews nejm.org/doi/full/10.1056/NE…
36
In end of 2025 we launched our HCM Knowledge Quiz. As of today there are 202 replies in several languages so we decided to make a summary of the results so far (see in link). They are enlightening about the gaps in knowledge and perception we have. #HCM hcmpatient.eu/blog/hcm-quiz-…
35
Check out the IX episode of the HCM Pills webcast with @MasriAhmadMD. We discuss some exciting newly emerging treatments for HCM and amyloidosis.
Thanks for sharing!
Thanks also to our sponsors from @AstraZeneca, @bmsnews, @Cytokinetics and @EdgewiseTx!
youtu.be/5nagI9F_6pQ
108
A good start to the New Year - our new T-shirts with Hearty are here! And aren't they cute? 😍
Support us by becoming a member and get one!
hcmpatient.eu/become-a-membe…
✨ 2025 in review – HCM Patient Foundation ✨
A year of research, innovation, awareness, events, collaboration, and community 💙
Thanks to everyone who supported us! We’re just getting started — follow us to keep building the future of HCM together.
#HCM #HCMAwareness
HCM Patient Foundation retweeted
We’re excited to announce that the @US_FDA has approved our new medicine for the treatment of symptomatic obstructive hypertrophic cardiomyopathy (oHCM).
Learn more here: bit.ly/48MHEMF
#HCM #CardioTwitter
SPECIAL CHRISTMAS HCM PILLS EPISODE is here!
🎄🎁
Can aberrations of cardiac electrophysiology be converted to music? They sure can! Check out the mastery of Dora Deliyska in bringing out artful music from heart arrhythmias!
/etudes by Prof. Elaine Chew/
youtu.be/vnm0xhGQRHM
HCM Patient Foundation retweeted
"I'm sharing my journey of failure... 💔 We're using our experiences to aim for an improved healthcare system." Live now: Patient Voices in Action: How Lived Experience Can Guide a Transformative EU Cardiovascular Health Plan at the @EUCVHAlliance Cardiovascular Health Summit.
Thank you to the patient panel, Francesca Musso (@HcmPatient, Global Heart Hub), Kostas Tagkalos (@IntDiabetesFed), @DianaWongRamos1 (Portugal AVC, @StrokeEurope, Global Heart Hub), @marcrijken (Global Lp(a) Taskforce, @fhpatienteurope)
#CVHealthForAll #EACHSummit #SafeHearts
