Further support

Running a charity or support group for people living with a genetic and rare condition can be incredibly rewarding, but at times it is also challenging. The good news is that there are lots of sources of support if you want to set up a charity or support group, grow an existing charity or support group, or need help with a specific aspect of your work. 

We’ve pulled together a list of the organisations that our members tell us they have found helpful when seeking support. If you are a member organisation and there is an organisation not listed here that you think we should include, please let us know by emailing [email protected]

Please note these links lead to sites maintained by other groups or organisations, please read our disclaimer for more information.

For the charity and voluntary sectors

Support and advice for Chief Executives working in the voluntary sector.


Charity regulator in England and Wales which offers advice and support on setting up and running a charity.

Visit the Charity Commission website

Support and advice for organisations working in the voluntary and community sector.

Access NCVO’s support

Charity regulator in Scotland which offers advice on setting up and running a charity.

Visit Office of the Scottish Charity Regulator‘s website

For the health and disability sectors

Supports charities that fund medical research by developing guides, providing training, and carrying out an audit of their funding processes.

Visit AMRC

Supports families with disabled children including information and advice on benefits, education and more.

Visit Contact’s website

Coalition of charities and other organisations committed to working towards a fair benefits system.

Visit the Disability Benefits Consortium

Coalition of organisations who campaign for improved health and social care for disabled children, young people and their families.

Visit the Disabled Children’s Partnership

Network for people working in health information and support, and manage the PIF TICK quality mark for health information.

Visit the Patient Information Forum

For the genetic and rare sectors

Provides training to help rare disease patient support groups form, grow and professionalise.

Visit the Beacon for Rare Diseases website

Network of organisations working to improve the lives of families from diverse and marginalised communities who are affected by genetic conditions, so they have equal access to health services.

Visit Breaking Down Barriers‘ website

A non-profit alliance of rare disease patient organisations from 74 countries that work together to improve the lives of people living with a rare disease globally.

Vist EURORDIS‘ website

Genetic conditions support network.

Visit Gene People‘s website

Provides education in the rare disease field for medical students and doctors in training.

Visit Medics 4 Rare Diseases‘ website

Global alliance for people  living with a rare disease and their families.

Visit the Rare Diseases International website

Provides counselling for the rare disease community and campaigns for recognition of the importance of specialist mental health support.

Visit Rareminds’ website