A handbook for those who want to ascertain the genetic origin of hypertrophic cardiomyopathies
A handbook for those who want to ascertain the genetic origin of hypertrophic cardiomyopathies
Dear Friends of AICARM,
the May 2023 issue of AICARM NEWS inaugurates a new way of offering information and services to members, their families and all interested parties. It contains a sort of handbook for all patients who turn to specialists to identify - if any - the genetic origin of their cardiomyopathy and ask themselves questions about the times and methods of counseling, the characteristics and effectiveness of the tests and the what to do after possibly identifying a genetic mutation.
Doctor Francesca Girolami, geneticist at the Cardiogenetics laboratory of the Meyer children's hospital, summarized in fifteen questions and as many answers the doubts, uncertainties, perplexities that have emerged during her long professional career. The result is a brief but essential instruction manual, but also one of reassurance, given that it is reassuring to learn that one's problem has already been addressed and resolved on many occasions, which we hope will be at hand for all those who intend to contact the genetic counseling. The extensive file published here is therefore the first of a series that we intend to continue periodically with AICARM NEWS, alternating news, stories and scientific interventions with service information, the use of which must be as simple and immediate as possible. utility.
The President
Prof. Franco Cecchi
Genetic testing and counseling in hypertrophic cardiomyopathy
Genetic testing and counseling in hypertrophic cardiomyopathy
The 15 most frequently asked questions in genetic testing and counseling in hypertrophic cardiomyopathy
There are 15 questions that Francesca Girolami, geneticist at the Cardiogenetics laboratory of the Meyer pediatric hospital, has heard from patients in over twenty years of career, on the subject of hypertrophic cardiomyopathies. Girolami answers clearly on the crucial relationship with the genetic origin of the disease and on the test to detect mutations.
AICARM NEWS
The release of the book "The big heart - Stories of women and men facing the challenge of cardiomyopathies" is approaching
A book has been released in recent weeks that Aicarm considers an important point of arrival for the activity carried out in the three years since its foundation. The title of the book is “Il Cuore Grande – Stories of women and men facing the challenge of cardiomyopathies”, edited by the journalist Laura d'Ettole and by Prof. Franco Cecchi, president of AICARM, with the support of the CRF Foundation. It contains twenty stories collected by the journalist or told directly by patients. The work is part of the so-called narrative medicine, a methodology of intervention in the practice of care based on the importance of communication and relationships, on listening to stories and people. The book will be sent free of charge to all members who request it and it will be possible to purchase it through Amazon and other digital platforms.
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AICARM NEWS in PDF
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