External Resources

Useful Information and Websites

ALISS (A Local Information System for Scotland)

ALISS is an information system to help you find local support when you need it most.

Rare Resources Toolkit Scotland

The Toolkit contains a wide range of general information on genetic, rare and undiagnosed conditions as well as information on how to access reliable information, care and support in Scotland.

RHC Family Support and Information Service

Located in the Royal Hospital For Children, Glasgow

Carers Scotland

Helping carers and professionals, with expert advice on issues such as carers’ benefits, community care and services for carers.

Children’s Health Scotland

Children’s Health Scotland is dedicated to informing, promoting and campaigning on the healthcare needs and rights of all children and young people.

Rare Connect

A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages.

Useful Information and Websites:

Children and Young People’s Commissioner Scotland
European Reference Networks (ERN)
Genetic Alliance UK
Health and Social Care Alliance Scotland
Scottish Genomes Partnership (SGP)

Found a site/publication/social media site that you found useful? Then contact us and let us know; we can check it out and possibly add it to the list.