AICARM NEWS – January 2025

Mavacamten is an innovative drug that represents a concrete and immediate hope and an alternative to surgery for many patients with Hypertrophic Obstructive Cardiomyopathy. Yet, while it is already available in most of Europe, in Italy the manufacturing company has guaranteed a few hundred patients an early access program during 202. However, the program was then interrupted pending authorization for the reimbursement of the drug.

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For the first time, for 2025, AICARM has equipped itself with a Program Plan, a strategic document that indicates the fundamental areas of action, resources, and the adoption of software that standardizes the planning and monitoring of activities. The Plan represents "an important turning point in the management of the association's activities", comments Marigrazia Catania, member of the AICARM Board of Directors.

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The Auxologico Cardiomyopathy Center in Milan has introduced two new services in collaboration with AICARM: psychological support for patients with cardiomyopathy and their families and non-competitive sports certification. These services are also open to those who are followed by other centers. An online platform has been implemented to facilitate access. "We want to respond to the needs of anyone who needs it," says Prof. Lia Crotti, head of the Center.

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According to a study published in the Journal of the American Heart Association, patients with HCM can safely benefit from personalized exercise plans up to moderate intensity. Research shows that avoiding inactivity altogether is essential for heart health. Experts therefore recommend that patients start with a few sessions per week, gradually increasing activity.

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The next AICARM webinar will be held on January 30 on the Zoom platform, from 18:30 PM to 19:30 PM, with Prof. Flavio D'Ascenzi (University of Siena) as speaker and Dr. Niccolò Maurizi as moderator. The event will explore key topics such as the benefits of sports, myths and risks related to cardiomyopathy, the role of sports cardiologists and the use of wearable devices. To register, visit the official AICARM website.

Sign up here

III Training Course for Patients Experts in Hereditary Myocardial Diseases

AICARM and the Istituto Auxologico Italiano are organizing a training day dedicated to patients with cardiomyopathy. Industry experts will address topics of great interest to patients with cardiomyopathy: from genetic diagnosis to daily management of the disease, from the most recent therapies to psychological support, up to physical activity and pregnancy.

The course, which will be held at the San Luca Hospital (Piazzale Brescia 20, Milan), is an opportunity to acquire in-depth knowledge and share experiences with other patients.

(I.e. Go to the course presentation page

In 2024 AICARM collected 13.633 € thanks to 65 donors, with heartfelt thanks to those who contributed via the site or bank transfer. Great satisfaction also for the growth in donations via 5×1000 which, between 2022 and 2023, more than doubled in amount from 21.000 to 45.000 euros and recorded a 40% increase in the number of donors. The funds were allocated to the activities of the association, illustrated in the annual report published on www.aicarm.it. To request receipts useful for tax purposes, you can contact info@aicarm.it, providing the details of the donation and your personal data. A special thank you to everyone for the support!

AICARM invites you to participate in a major European survey on Hypertrophic Cardiomyopathy. The survey is organized and conducted by HCM Patient Foundation, whose mission is to support patients with Hypertrophic Cardiomyopathy (HCM) and their families, at a European level. The aim is to create a complete profile of HCM-CMI patients, collecting opinions, concerns and wishes to develop useful projects, promote better laws and publish scientific results. The survey, available in 13 languages, takes 25-30 minutes. The data will be anonymous and used for research purposes only. Participants will be entered into a draw to win a professional D-Heart ECG device worth 450 euros and 10 HCM Patient Foundation T-shirts. All participants will receive a free electronic copy of the novel “The Green Tunnel” by Emil Tsenov (in English). Deadline: 16 February 2025.

Take the survey here

Unfortunately, the AIFA website has again reported the shortage of Ritmodan for the next two months and several patients have unfortunately already contacted AICARM for this. AICARM has already taken action to help patients. For information, write to info@aicarm.it

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Piero Meucci

AICARM APS periodically publishes AICARM NEWS, the AICARM newsletter. You can receive upcoming releases directly in your email inbox by filling out the form below. To consult the issues released, consult the page: AICARM NEWS, the AICARM newsletter.