Dear friends of AICARM,
There are important news on the drug front. While we await the return of Nadolol to pharmacies, which should be imminent as indicated by the Italian Medicines Agency, Mavacamten is already available for "compassionate use". This means that the drug is already available and can be supplied by the manufacturer to a particular patient while waiting for it to become reimbursable. Professor Iacopo Olivotto takes stock of the situation and illustrates the characteristics and status of the trials on this medicine.
As regards the activity of our Association, we must note with satisfaction the strengthening of the volunteer service at the Careggi Unit. One of them, Valerio Pelini, our vice president, talks about it. It is not trivial to remember how important personal contact with the patient is, especially in the initial moment of the diagnosis which changes his life. The work of volunteers in the field complements the Cuori in Ascolto service, which offers an essential first contact to those in need of immediate support.
Happy reading
The President
Prof. Franco Cecchi
Mavacamten ready for “compassionate use”, perhaps in a year it will be refundable
Mavacamten ready for “compassionate use”, perhaps in a year it will be refundable
In a long interview, Professor Olivotto gave us updates on the clinical studies of the drugs Mavacamten and Aficamten for cardiomyopathies. The compassionate use of Mavacamten is starting, while the results of the study on Aficamten will be available in the spring. The two drugs differ in titration times, interactions and duration of action.
At the moment, research on drugs for cardiomyopathies is growing rapidly and there are numerous trials around the world. Similar new molecules are in development, offering significant hope for improving the quality of life of patients with cardiomyopathies.
Prof. Iacopo Olivotto
Volunteers doubled in Careggi, supporting patients after the "tsunami" of the diagnosis
Valerio Pelini, Aicarm volunteer, tells in this interview how in Careggi our volunteers support patients with cardiomyopathies during outpatient visits, offering information on the association and providing psychological support. This activity, part of Aicarm's initiatives to improve the quality of life of patients, has achieved a positive synergy with the Cardiomyopathy Diagnosis and Treatment Unit.
Tuscany, with 27.000 associations and 500.000 volunteers, confirms itself as a region with a strong social commitment. Volunteering today is a fundamental pillar of solidarity and social cohesion.
Valerio Pelini volunteer and Vice President of Aicarm
Proper hydration is crucial to patient health
Hydration is crucial for health, especially for the heart. Following EFSA guidelines, adults are advised to drink at least 2 liters of water a day. Recommendations vary by age and environmental conditions. Water benefits heart health by reducing blood viscosity and regulating cellular activities. It is essential for those taking anti-hypertension medications, especially in hot situations.
Adapting water intake to individual needs is crucial to maintaining proper hydration and contributing to overall and cardiac health.
In Milan, training course for patients expert in hereditary myocardial diseases
The training course for patients expert in hereditary myocardial diseases will take place in Milan on 23 March 2024. The course will delve into concepts of fundamental importance regarding the diagnosis, therapies and lifestyle for patients with cardiomyopathy. Those present will be given the opportunity to ask questions and share experiences; and furthermore, debates and further insights will be opened on the pharmacological therapeutic options inherent to cardiomyopathies and specific surgical procedures, such as myectomy and mitral plastic surgery. The headquarters is the San Luca Hospital – Italian Auxological Institute, Piazzale Brescia, 20 – 20149 – Milan – Meeting Room Eighth Floor
The course is free, financed by the AICARM APS Association and is carried out in collaboration with the San Luca Hospital – Italian Auxological Institute.
AICARM will participate in the meeting in the Senate for the presentation of the Italian Report on cardiomyopathies
The meeting with the President of the Parliamentary Intergroup for cardio and cerebrovascular diseases has been scheduled for March 19th, and the press conference in which the document will be presented to support the importance of Cardiomyopathies and propose initiatives to help affected patients and encourage scientific research in this sector.
Prof. Gianfranco Sinagra, Iacopo Olivotto, Franco Cecchi and the engineer Matteo Pinciroli will participate, the latter representing AICARM.
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