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Rare Resources: Wales

Rare Resources is an ambitious project to offer high-quality guides about rare, genetic and undiagnosed conditions across the UK. The campaign is a response to the gaps in information often reported by people starting their journey with a rare, genetic or undiagnosed condition

Download the Rare Resources Guide for Families.PDF/4 MB

Rare Resources: Starting your journey

Rare Resources is an ambitious project to offer high-quality guides about rare, genetic and undiagnosed conditions across the UK. The campaign is a response to the gaps in information often reported by people starting their journey with a rare, genetic or undiagnosed condition

Everyone affected by rare, genetic and undiagnosed conditions can benefit from the Rare Resources library. The guides are especially useful to people just starting their condition journey and their loved ones, as well as healthcare professionals who are seeking further information about these conditions.

All materials that are part of Rare Resources were proudly developed in collaboration with people affected by genetic, rare and undiagnosed conditions, as well as support organisations and healthcare professionals.

Rare Resources – Cymru

 

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 – Cymru also includes a guide and toolkit of awareness raising resources for health professionals involved in the care of people with a rare condition in Scotland. It may also be useful for social care professionals, education providers and family support workers. This guide includes:

  • Information to help professionals better understand the needs of people with rare conditions.
  • Information on how to assist families to access appropriate care, information and support.
  • Links to reliable sources of information and support.
  • Links to training resources for health professionals.

View our guide for professionals

Top Tips 

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 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.

Get organised: 

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: