Francesca Musso

 I am a patient advocate living with non-obstructive Hypertrophic Cardiomyopathy (HCM). I was diagnosed at the age of 24 and later received a subcutaneous implantable cardioverter-defibrillator (S-ICD), which saved my life. Through my Instagram platform, I raise awareness, share my experience, and support patients and families living with inherited cardiomyopathies. I am passionate about promoting patient education, peer support, and a more patient-centred approach to care.

Role in AICARM
Member
Providing a patient testimonial on the AICARM website

Role in the European Patient Advocacy Group
ePAG member since 2026

Goal to achieve by being an ePAG
My goal is to ensure that people living with inherited cardiomyopathies are not only diagnosed but also supported throughout their lives. A diagnosis is the beginning of a lifelong journey, and patients need clear information, education, psychological support, and practical guidance to learn how to live well with their condition. I want to promote a healthcare system that sees patients as people, not just diagnoses, and values their voice in improving care, research, and policy.

Contact:
francesca.musso@mail.com