Cardiomyopathy UK Launches New Genetic Advice Helpline

As we start the new year, Cardiomyopathy UK is pleased to share news of the launch of its new Genetic Advice Helpline. This service has been developed to complement their existing nurse led helpline and to support people affected by cardiomyopathy who have questions or concerns about Inherited cardiomyopathy and genetic testing.

The Genetic Advice Helpline is delivered by the Cardiomyopathy UK specialist cardiomyopathy nurses and is designed to help patients and families better understand genetics in the context of cardiomyopathy. It can support people who are worried about inherited cardiomyopathy, uncertain about genetic testing, or unsure what next steps might be for them or their relatives. https://www.cardiomyopathy.org/living-cardiomyopathy/how-we-can-help-you/genetic-advice-helpline

The helpline can:

• Explain how genetic testing works and what it may involve

• Talk through the potential benefits and challenges of testing

• Help people understand how results could affect them and their family

• Discuss family history and inherited cardiomyopathy

• Provide a supporting letter advising the GP on national guidance and why referral to the appropriate NHS specialist centre for screening would be advised

It is important to note that the helpline does not replace NHS genetic services and cannot arrange or interpret genetic tests. Decisions about testing and clinical management remain within NHS specialist services. However, access to genetic testing across the NHS can vary, and many patients feel unsure or anxious while waiting for referrals or results. The helpline offers trusted, independent support alongside NHS care, helping cardiomyopathy patients feel informed and supported as they navigate this process.

Please share the attached information with your patients and colleagues who may find this dedicated cardiomyopathy advice service helpful. If you would like printed leaflets, or posters for use in clinics, please let Cardiomyopathy UK know and they will be happy to arrange this.

Thank you so much for your continued support in helping people affected by cardiomyopathy access the information and reassurance they need. Cardiomyopathy UK would be really happy to attend any forthcoming MDT meetings to share more about their services and how they support people living with cardiomyopathy.

If you would like any further information, or want to talk about how this service could support your patients, please get in touch with Rebecca Stern at rebecca.stern@cardiomyopathy.org