Rare Resources – Cymru is a collection of bilingual information guides for families who have recently received a diagnosis of a genetic or rare condition, are on the journey to a diagnosis, or have been told their child’s condition is so rare they may not get a diagnosis. These have been developed and produced with funding from The National Lottery Community Fund Wales and are available in both English and Welsh.
Rare Resources Wales has been developed in collaboration between Genetic Alliance UK and families in Wales and provides links to reliable sources of information and support and contains ‘top tips’ from families. The Rare Resources Wales includes the following guides:
Rare Resources Wales has been developed in collaboration with parents, carers and health professionals involved in the care of children with a genetic, rare or undiagnosed condition. Here are some ‘top tips’ from them.
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. Rare Resources Wales provides 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. Rare Resources Wales explains how you can find support from other families.
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. Rare Resources Wales explains support available to families in Wales.
Keep a copy of all letters and information relating to your child’s health in one place. This will ensure you have all the important information together and help you keep track of your child’s progress. Rare Resources Wales provides advice on managing your child’s appointments and using the NHS in Wales.
Further information about genetic, rare or undiagnosed conditions
You can find more information on genetic, rare and undiagnosed conditions at: