Useful Links

Click here to see a list of our Stakeholders.

Working with Our Stakeholders

We have strong links with professional organisations such as the Clinical Genetics Society, British Society for Genetic Medicine and European Society of Human Genetics. We work closely with the UK Genomic Medicine Centres (GMC) which are delivering the 100,000 genome project and have representation from GMC leads on the specialty group. We have similar strong links with the regional genetics laboratories.

We also have good relationships with charities such as the Genetic Alliance UK, Unique and Contact a Family and have patient/charity representation on the specialty group. Group members are heavily involved with the training of future researchers and as such we work closely with the Royal Colleges, Universities and health education organisations across the UK.

Charities and other organisations

There are a number of research councils and other funders of genetics research with funding calls open right now.  The list below is not exhaustive but gives potential researchers a good idea of where to go to access funding for studies into these conditions.

  • The British Society for Genetic Medicine(BSGM)
    The British Society for Genetic Medicine (BSGM) represents health professionals working in specialised genetic services in the NHS and scientists and health professionals in medical research.
  • European Society of Human Genetics (ESHG)
    A non-profit organization that aims to promote research in basic and applied human and medical genetics, to ensure high standards in clinical practice and to facilitate contacts between all persons who share these aims, particularly those working in Europe.
  • National Genetics and Genomics Education Centre
    Established in 2005 and funded by the Department of Health as one of the major initiatives of the 2003 Genetics White Paper ‘Our Inheritance, Our Future – Realising the potential of genetics in the NHS’. One of the main aims of the Centre was to improve the understanding of genetics among healthcare professionals and its role in modern healthcare.
  • Genetic Alliance UK 
    A the national charity working to improve the lives of patients and families affected by all types of genetic conditions. It is an alliance of over 160 patient organisations.
  • SWAN UK – Syndromes without a name 
    A project run by Genetic Alliance UK offering support and information to families of children with undiagnosed conditions.
  • Rare Disease UK
    Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them. We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support.
  • BioNews 
    The principal aim of BioNews is to provide accurate, balanced and timely news and comment on genetics, assisted conception, embryo/stem cell research and related areas.