A row of all the Rare Resources covers

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. 

These guides are downloadable toolkits of information and sources of support for people living with genetic, rare and undiagnosed conditions in England, Scotland and Wales. 

The guides contain a wide range of general information on rare, genetic and undiagnosed conditions as well as information on how to access reliable information, care and support. They were developed in collaboration with families supporting children living with genetic, rare and undiagnosed conditions.

If you find these guides useful, please consider making a donation to help us continue our vital work.

Rare Resources England

  • Guide for families in England (coming soon)
  • Genetic, rare and undiagnosed conditions explained (coming soon)
  • The journey to diagnosis (coming soon)
  • Using the NHS in England (coming soon)
  • Support and information for parents and carers (coming soon)
  • Support and information for your child (coming soon)

The Rare Resource guides for England have been developed with funding from our industry partners, the Sir James Roll Trust, the Hospital Saturday Fund and The James Tudor Foundation.

Rare Resources Wales 

Our Rare Resources Wales are available in both English and Welsh. 

The Rare Resource guides for Wales have been developed and produced with funding from The National Lottery Community Fund Wales.

Top tips by families, for families


Find reliable information and support 

It may be helpful to find information on your child’s condition. For some conditions there may be a support group available. The Rare Resources guides provide information on how to access reliable information and support, even if your child does not have a diagnosis.


Don’t be afraid to ask for help 

Remember it is completely normal to feel overwhelmed from time to time. Don’t be afraid to ask for help if you need it. 


Meet other parent carers 

It can be very beneficial to meet others who are experiencing, or have experienced what you are going through. 


Understand your rights, and the rights of your child 

You may find that you and your child are eligible for practical, emotional and financial support. The Rare Resources guides contain information on the support available to families in England, Scotland and Wales. 


Get organised 

Keep a copy of all letters and information relating to your child’s health together. This will ensure you have the important information together and help you keep track of your child’s progress.

Help us produce more resources

We believe that everyone should have access to clear and accurate healthcare resources, no matter how rare your condition is, or whether you have a diagnosis. Donate today and support our future projects for the rare, genetic and undiagnosed communities in the UK.

Donate now