The following organisations and websites provide information on certain conditions, and many also offer various types of support for those who do not yet have a diagnosis.
- NHS.uk is useful for further information on the many types of conditions including cancer.
- If you or someone you care about has been diagnosed with cancer, there are many organisations who can help. Macmillan and Cancer Research UK can provide support in a range of ways.
- Rare Diseases UK – work on a variety of issues that families and individuals with genetic conditions face. We aim to provide information, support families and influence the services needed by these patients.
- Genetic Alliance UK - an alliance of 180 patient organisations, many of which are condition specific UK charities and support groups who exist to support children, families and individuals. They are the experts in understanding their specific conditions and at providing the support that you need.
- Unique - is a charity supporting, informing and networking with families living with rare chromosome disorders and single gene disorders associated with learning disability and developmental delay. They also have specific advise for families.
- Cambridge Rare Disease Network- run a community group for those affected by rare disease in the Cambridgeshire/Eastern region
If you do not yet have a diagnosis, or your genomic test does not provide one, SWAN UK can provide support.