Understanding the genetic side of cardiomyopathy can feel confusing and overwhelming. Families often have questions about what testing means, whether relatives should be screened, or how to talk to children about inherited risk, and clear answers can be hard to find.
To help bridge that gap, Cardiomyopathy UK will be launching a new genetic advice helpline in 2026, offering expert guidance and reassurance for anyone who wants to understand more about the genetic aspects of the condition.
The helpline builds on our long-standing nurse-led support model, which already helps hundreds of people each year with questions about diagnosis, treatment, and living well with cardiomyopathy. The new service adds a specialist strand of advice focused specifically on genetics, an area that’s becoming increasingly important as more people are referred for testing or receive complex results.
Led by our clinical nurse specialists, the helpline provides information about what to expect from genetic testing, how to access referrals, and how to interpret results. It also offers emotional support for people who might feel anxious or uncertain about what their results mean for them and their family.
“Genetic testing can bring real clarity, but it can also raise a lot of questions,” says Jayne, one of our Nurse Services Managers. “We want to make sure people have somewhere safe to talk about those feelings and get accurate, understandable information they can trust.”
The service complements the medical advice people receive from their clinicians by focusing on the emotional, practical, and family aspects of genetic information. It also offers tailored signposting to external organisations and resources, including NHS genetic clinics and counselling services.
By introducing this service, Cardiomyopathy UK aims to help people approach genetic testing with more confidence and less fear.
“This is about making genetics feel accessible, not intimidating,” says Becca, Chief Operating Officer. “When people understand what’s happening and what their options are, they feel empowered to make informed decisions and support their loved ones.”
If you have questions about genetic testing or inherited cardiomyopathy, you can contact our helpline at supportnurse@cardiomyopathy.org or call 0800 018 1024 (Monday to Friday, 8.30am–4.30pm).