HCM Patient Foundation Europe

26/05/2026

✨ We are proud to present Project AURA ✨

A play form connecting HCM patients in need of psychological support with qualified professionals.
Patients can register, get approved, and book a free one-hour online session with a psychologist, with up to five appointments available.
AURA is already active in Italy 🇮🇹 and we look forward to expanding across Europe 🌍

Stay tuned for more exciting projects!
Link in the first comment!

20/05/2026

When the European Commission launched a call for evidence on cardiovascular disease screening, experts, researchers, clinicians, patient advocates, patients, families, and carers from across Europe joined forces in the European Coalition for Inherited, Congenital and Sudden-Death-Related Cardiovascular Disease Prevention.
Our foundation was proud to contribute to the feedback submitted by ERN GUARD-Heart.

Special thanks to .cardiologia, MD, PhD, MSc, for initiating and coordinating this important initiative!

• Read more at the link in the first comment!

19/05/2026

Visited the magnificent new Global Hub of our partners at AstraZeneca in Barcelona 🇪🇸✨
Met their inspiring, patient‑centric R&D and Global Corporate Affairs teams and explored exciting avenues for future collaboration.
Grateful for the warm welcome and energized by what’s ahead!
AstraZeneca

13/05/2026

Progetto AURA.
Supporto psicologico gratuito per pazienti italiani di cardiomiopatia ipertrofica.
Info su aura.hcmpatient.eu

07/05/2026

Another sneak peak from Episode 10!

Full video https://m.youtube.com/watch?v=prdiXSl4evU

05/05/2026

Excellent news for non-obstructive HCM patients! Cytokinetics just announced positive topline results from their ACACIA-HCM study, a Phase 3 clinical trial of aficamten in patients with non-obstructive HCM. Improvement targets in both primary endpoints - Kansas City Cardiomyopathy Questionnaire Clinical Summary Score (KCCQ-CSS) and maximal exercise performance (pVO2) from baseline to week 36 compared to placebo - were met. Decrease in left ventricular ejection fraction (LVEF) to under 50% occurred in 27 (10%) participants taking aficamten and in two (1%) participants taking placebo, underlying the need for monitoring and careful dosage of cardiac myosin inhibitors.

You can read more details in the press release about the study which represents a significant new step in covering the needs of non-obstructive patients. Congrats to everybody involved in it!

Trial Met Dual Primary Endpoints of KCCQ and Maximal Exercise Performance With Consistent Positive Findings Across Key Secondary Endpoints Company to Host Conference Call and Webcast Tuesday May 5 at 8:00 AM Eastern Time SOUTH SAN FRANCISCO, Calif., May 05, 2026 (GLOBE NEWSWIRE) - Cytokinetics, Inco...

04/05/2026

Vivere con la cardiomiopatia ipertrofica (CMI) significa imparare a prendersi cura del proprio cuore in modi nuovi.

Con AURA, puoi accedere a un supporto psicologico gratuito da parte di specialisti che comprendono le patologie cardiache e ciò che ne consegue.

• Registrati in pochi minuti
• Ottieni l'approvazione
• Connettiti direttamente con uno psicologo
• Ricevi un supporto personalizzato in base alla tua situazione.

Con la giusta cura, la vita con la CMI può essere altrettanto piena.
Prenditi cura del tuo cuore straordinario.
https://aura.hcmpatient.eu

29/04/2026

Episode 10 is out!
If you haven’t watched yet, here is the link to it: https://m.youtube.com/watch?v=prdiXSl4evU

28/04/2026

🎥 Episode 10 of HCM Pills is out now!

Our guest for this milestone episode is Assoc. Prof. Jodie Ingles, Head of the Clinical Genomics Laboratory at the Garvan Institute of Medical Research in Sydney.
With over 20 years of experience as a cardiac genetic counselor at the Royal Prince Alfred Hospital, she has worked extensively with families affected by inherited heart diseases.

In this episode, we explore genetic counselling in hypertrophic cardiomyopathy (HCM): real-life scenarios, when to recommend genetic testing, how counselling integrates into patient care, and much more.

Thanks to everyone for watching, commenting, and sharing!

1 like. "HCM Pills Episode 10 Assoc. Prof. Jodie Ingles "Genetic Counselling in HCM""

24/04/2026

In Brussels for European Youth Week!
Francesca Musso is taking part in the breakout session “Young hearts, healthy futures: engaging youth in shaping Europe's cardiovascular health priorities.”
A meaningful opportunity to represent young patients and actively contribute to defining Europe’s cardiovascular health priorities.
We believe in the power of youth engagement to build a healthier, more informed future for all.