Useful information: genetics

Patient information leaflets

Websites

General information

  • Genetic Alliance UK
    A national charity working to improve the lives of patients and families affected by all types of genetic conditions.

Support group websites

General support

  • Antenatal Results and Choices (ARC)
    Helping parents and healthcare professionals through antenatal screening and its consequences.
  • Contact a family

    Contact is a charity for families with disabled children. Their vision is to bring families together to support each other, and help families to campaign, volunteer and fundraise to improve life for themselves and others.

  • SWAN UK

    Support for families affected by a syndrome without a name.

  • Unique
    Support group for anyone affected by a rare chromosome disorder or an autosomal dominant single gene disorder.

Cancer support

  • AMEND

    The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is a patient group set up to support and inform anyone affected by or interested in multiple endocrine neoplasia disorders and their associated endocrine tumours. AMEND is run by patients, for patients.

  • BRCA umbrella
    Bringing together those dealing with a BRCA or other gene mutation, a high risk or hereditary cancer.
  • Cancer Research UK
    Cancer Research UK is dedicated to preventing, controlling and curing cancer through research, as well as providing up-to-date information for the public.
  • Macmillan Cancer Support
    A source of support for everyone affected by cancer, their family and friends.
  • Wessex Cancer Trust
    A local charity aiming to help people living with cancer by offering emotional, physical and practical support.

Cardiac disorder support

  • Cardiomyopathy UK
    Specialist charity for people affected by cardiomyopathy, providing support and information services for families and healthcare professionals.

Rare disorder support

  • MNDA
    MNDA provides information about motor neurone disease, what help is available, and support for families affected and professionals.
  • Muscular Dystrophy Campaign

    A UK charity dedicated to beating muscular dystrophy and other related conditions by finding treatments and cures and to improving the lives of everyone affected by them.

  • Nerve Tumours UK
    Provides support for people in the UK who have neurofibromatosis (NF1 and NF2), schwannomatisos and Legius syndrome.
  • PTEN Research Foundation
    As well as funding medical research, the PTEN Research Foundation aims to facilitate those affected by PTEN Hamartoma Tumour Syndrome (PHTS) to find access to the support and information they need to improve the management and monitoring of their condition.
  • PURA Syndrome Foundation
    The PURA Syndrome supports and educates patients and their families, providing a global community. The Foundation also provides access to relevant medical research studies.

Research

  • 100,000 Genomes Project
    The project will sequence 100,000 genomes from around 70,000 people. Participants are NHS patients with a rare disease, plus their families, and patients with cancer.