Rare Resources guides
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.
Welcome to our resources hub! Here you will find information, reports, guidance and templates relating to genetic, rare and undiagnosed conditions. We update this page with new resources regularly.
Take a look
Facts and figures
These facts and figures provide an easy and impactful way to raise awareness and understanding of the challenges of living with a rare, genetic or undiagnosed condition in the UK. We encourage use of the information here in our member organisations’ own reports and other content.
Seeking a Rare Diagnosis | Adults
This guide is for adults who think they may have a rare condition and are seeking a diagnosis using NHS services in England.
Seeking a Rare Diagnosis | Children
This guide is for people who think their child may have a rare condition and are seeking a diagnosis for them using NHS services in England.
Engaging with small and micro patient advocacy groups
Funded by Genomics England, Genetic Alliance UK has developed guidance to help large organisations engage with small patient advocacy groups in a way that is proportionate to the time they can contribute and helps them to gather and share the views of their community as easily as possible.
‘How to’ toolkit for creating accessible condition-specific information
Alongside Genomics England and Unique, Genetic Alliance UK has developed a ‘how to’ toolkit that can be used by charities, support groups, patient groups and the NHS to write genetic and rare condition-specific information that is accessible for people with a wide range of requirements.