Local support organisations in Great Britain


Main Goals
  • Educates and raises awareness
  • Promotes the need for testing prior to birth and the use of pulse oximetry/echocardiograms
  • Raises media and public awareness of CHD
Contact Hazel Hunt
E-Mail chduk(at)hotmail.co.uk
Phone + 44 7816 1086 81
Web http://www.congenital-heart-defects.co.uk

Children`s Heart Federation

Members Leading charity in the UK and umbrella body
Main Goals

To support the parents and carers of children and young people with congenital heart disease (CoHD) by:

  • Raising and maintaining awareness about congenital and acquired heart conditions
  • Bringing about permanent improvements in the social and medical care of children with heart conditions and their families
  • Providing advice, information and practical support according to the needs of our stakeholders
  • Preparing young people with CoHD for life after family support, so they can live independently and make informed decisions about their future well-being
  • Working in partnership with the education, health-care and social-care sectors and other charities to ensure that congenital and acquired heart conditions are fully understood and that the needs of children and young people with heart conditions and their families are met 
  • Supporting our member groups and helping them to grow and develop
  • Helping children and young people with heart conditions and their families to meet and spend time with other people in the same position as themselves.
Contact Children`s Heart Federation
Mrs. Anne Keatley-Clarke
2-4 Great Eastern Street, London EC2A 3NW
Great Britain
E-Mail info(at)chfed.org.uk
Phone +44 20 7422 0630
Web www.chfed.org.uk

Grown up Congenital Heart Patients Association (GUCH PA)

Members 2450
Main Goals
  • Fight for right of patients, combating the discrimination that prevents them from enjoying equal rights in the workplace and entitlements to goods and services
  • Empower patients to reach their goals and manage their heart conditions by giving them information about their rights to appropriate treatment and the knowledge to be able to make decisions about their own future and their own healthcare
  • Help patients to understand and take advantage of the opportunities available to them
  • Free phone helpline, conferences and workshops
  • Free welfare benefits service, helping patients to secure their entitlements to benefits
Contact Paul Wilgoss
GUCH Patients Association
Saracen's House
25 St Margaret's Green
E-Mail prg(at)guch.org.uk
Phone +44 1473 2520 07
Web www.guch.org.uk