Resources and Support Groups
Find out about the support and resources available to you.
We have provided answers to some commonly asked questions about genomics and genomic testing. You can find these on our FAQs page.
The Genomic Education Programme by Health Education England (HEE) has some useful information for those new to genomics and some bitesize courses which you may find interesting.
Genomics England is focussed on helping everyone benefit from genomic healthcare. They work with the NHS to deliver genomic testing, provide health data and technology to advance genomic research, and ensure patients and the public lead ethical discussions around genomics. Their website provides information about how genomics is advancing in the UK and how to take part in research.
Support Groups
There are a number of support groups for people with cancer or a rare disease and their families. These groups may also help you find local organisations that can provide support.
- ARC (Antenatal Results and Choices): A national charity helping parents and healthcare professionals through antenatal screening and its consequences. They offer impartial information and support to expectant parents facing decisions about antenatal tests and results.
- Unique: Their mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder, copy number variant or single gene disorder associated with learning disability/developmental delay and to raise public awareness.
- Genetic Alliance: They work on a variety of issues that families and individuals with genetic conditions face. They provide information, support families and influence the services needed by these patients. They also work to add patient voices into debates that matter to their community.
- Rare Disease UK: A national campaign run by Genetic Alliance for people with rare diseases and all who support them. Rare Disease UK is focused on making sure the new UK Rare Diseases Framework is as successful as possible.
- SWAN (Syndrome Without A Name): Approximately 6,000 children are born in the UK each year with a genetic condition so rare that it is often impossible to diagnose. Without a diagnosis it can be difficult to access basic information and support. SWAN provides information leaflets and offers 24/7 information and support for families through online forums.
- Gene People UK: Previously known as Genetic Disorders UK, their mission is to be the leading source of information and support for both those affected by a genetic condition, and the charities and patient groups that support them, by bringing together everyone’s combined experience in a place it can be shared. They offer a helpline service for those with genetic conditions.
- Roald Dahl’s Marvellous Children’s Charity: Working with the NHS, Roald Dahl’s Marvellous Children’s Charity provides specialist nurse support for seriously ill children living with complex, lifelong conditions.
- Beacon: A charity that is building a united rare disease community with patient groups at its heart. They upskill rare disease patient groups through training, guided programmes, community projects and research initiatives.
- Breaking Down Barriers: A network of organisations working together to develop supportive and inclusive services for individuals and families affected by genetic conditions. They support organisations within the network to develop creative and accessible ways to engage, support and involve people from diverse and marginalised communities and strive for equitable access to support and healthcare services for all.
- RareMinds: A not-for-profit Community Interest Company (CIC) who provide online counselling and wellbeing services for rare disease charities. Their mission is to provide affordable, timely access to highly specialised counselling and wellbeing resources, and raise awareness about the emotional impact of living with rare conditions.
You can find a list of Genetic Condition Charities & Patient Groups which focus on one condition or a small group of rare conditions on the Gene People UK website here: Genetic Condition Charities & Patient Groups – Gene People
- Macmillan: Macmillan is made of millions of supporters, professionals, volunteers and campaigners. Together they make sure you’re treated like a person – not just a patient – and get the support you need to live life as fully as you can.
- Cancer Research UK: They fund scientists, doctors and nurses to help beat cancer sooner, and also provide cancer information to the public. Their efforts are focused on four key areas – working to help prevent cancer, diagnose it earlier, develop new treatments, and optimise current treatments by personalising them and making them even more effective.
- Blood Cancer UK: Information on tests for blood cancer.
- Jnetics: A registered charity dedicated to improving the prevention and diagnosis of Jewish genetic disorders in the UK.