Patient Resources
Support for Patients and Families
There are many different organisations that support patients and families affected by genetic conditions. Many of these provide support and networking opportunities to people living with one specific condition or group of conditions.
If you visit an organisation’s website, you will often find:
- Information about the specific condition
- Resources that you can download e.g. patient information booklets
- Patient stories
- Opportunities to connect with other families living with the condition
- Research updates
As there are so many different charities and organisations, we are unable to list them all here. Instead, we have listed some websites that you can visit to find an organisation that supports people living with a specific genetic condition.
Some of the organisations below also provide general support to anyone affected by a genetic condition.
Unique
Unique provides support, information and networking opportunities to families affected by a rare chromosome disorder or a rare gene disorder. Unique has also produced a range of patient resources including booklets about specific genetic conditions, and a selection of practical guides. Browse their resources here.
Genetic Alliance
Genetic Alliance UK is an alliance of over 200 charities and support groups working together to improve the lives of people in the UK with genetic, rare and undiagnosed conditions. The Genetic Alliance website contains lots of useful information for families, including links to support groups for specific genetic conditions, and more general advice about living with a genetic condition.
A-Z Directory of Organisations
Use this A-Z directory to find a patient support group or charity representing the specific condition or groups of conditions you are interested in. If you are looking for support for a specific condition and cannot see a relevant organisation on the list, you can also contact the team for help using the email address listed at the top of the directory.
SWAN UK
SWAN UK is the only dedicated support network in the UK for families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed. The aim of SWAN UK is that every family gets the support that they need, regardless of whether or not they have a diagnosis.
Rare Resources Guides
The Rare Resources guides have been produced by Genetic Alliance UK for families who have recently received a diagnosis of a genetic or rare condition, are on the journey to a diagnosis, or who have been told their child’s condition is so rare they might not get a diagnosis.