Rare group resources
These resources have been created by rare groups themselves, for other groups to use or take ideas from.
Resources
School information pack – Action Duchenne
A user-friendly guide created for schools talking about what the condition is, what good support looks like, and lots of practical advice.
Activity book – The Aplastic Anaemia Trust
An activity book designed to be printed and sent to young people and children, as well as being a resource.
T-Kash transition tool – Alstrom Syndrome UK
The transition knowledge and skills in healthcare transition tool is to support young people with rare conditions.
Video and booklet for dads – Headlines Craniofacial Support
This group work with families affected by craniosynostosis and rare craniofacial conditions. They created a short video and new booklet for dads, who may find it more difficult to seek support.
