Carolyn Biro and a history of achievement

In 1977 Carolyn Biro, a mother of two young children, was first diagnosed with hypertrophic cardiomyopathy. At the time, there was no patient information available on her disease. Her children were later confirmed to have inherited the condition. Carolyn was shocked to find that many families were not being told of the need for regular heart checks. She committed herself to making a difference.

Picture of Carolyn Biro, founder of Cardiomyopathy UK

Through her dedication, drive and determination to help others, Cardiomyopathy UK was founded in 1989. Initially called the Hypertrophic Cardiomyopathy Association, we have grown to become the leading charity for cardiomyopathies within the UK and recognised around the world for the quality of our information and support. We have helped organisations in the USA, Australia, Canada and Ireland to develop their own national support groups.

Carolyn Biro’s vision of expert support so that everyone affected by cardiomyopathy lead long and fulfilling lives remains at the core of our work today. With recent advances in genetic research, the hope is that one day a cure will be found. Until then, we will help those in need of information and support.

Carolyn sadly died following a lengthy illness in 2002 but leaves a powerful legacy of a charity determined to continue her fight against heart muscle disease. Practical advice from her kitchen table was where we began, and today we honour her memory with the  'Carolyn Biro Lecture' at our annual medical conference to improve awareness and understanding.

Thanks to Carolyn's work we have achieved a great deal since our foundation including:

  • Expert authored booklets on each of the main types of cardiomyopathy
  • Specialist cardiomyopathy nurse advice through our helpline
  • Website with information and advice from experts
  • News about cardiomyopathy from researchers and clinics around the world
  • Awareness raised with stories in local and national newspapers, radio and TV
  • Booklets specifically for parents or for their affected child
  • Help with enquiries about insurance and benefits
  • Patient information days to give people greater insight into cardiomyopathy
  • Improved knowledge for doctors and nurses through our annual medical conference
  • Social media groups to connect people affected by cardiomyopathy with each other
  • Volunteer champions who visit GPs and clinics and promote our information and advice
  • Regular magazine and e-bulletins updating people with the latest news and research
  • Posters about our services for clinics to display so patients get the help they need
  • Mutual one-to-one support through our network of trained volunteers
  • Improved care through our collaboration with partner organisations
  • Heart failure guidelines to include cardiomyopathy thanks to our work with the NHS
  • Specialist advisors answering questions about the different types of cardiomyopathy
  • Presentations to schools to help them understand cardiomyopathy in young people
  • Videos for GPs to help them with care and referrals for diagnosis
  • Pushing for genetic testing and for first degree relatives to be screened
  • Adverts on public transport to increase awareness of the risk of sudden death
  • Greater public understanding through news items on local television and radio
  • Online forums for people to share experiences and connect with others
  • Clinical posts to increase the capacity of key medical centers
  • Improved patient care through our communications with doctors and nurses