Alongside Genomics England, 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.
This toolkit was shaped by the people and communities who will use it and our aim was to help with communicating complex information about genetic and rare conditions in ways that are easily understood.
The toolkit contains four documents:
- A process guide for developing condition-specific information
- A simple template that can be adapted to create condition-specific information leaflets
- A glossary which explains genetic and medical terms in plain English
- A guide describing different formats that can be used to ensure that information is accessible for people living with genetic and rare conditions (e.g. guidance on text size, how to create audio versions, etc.)
You can access and download the documents to edit in Microsoft Word via these links.
Download below
This toolkit was created in partnership with Genomics England.
We’re also hugely grateful to the following people and organisations for their invaluable input:
Nicky Scott at the South East Genomic Medicine Service
Claire Andersen and Anna Pelling at Unique
Adam Clatworthy at CRELD1 Warriors
Ángela Cas at ACTA2 Alliance
Anthony Heard at ITP Support Association
Catriona Taylor, Lisa Hill and Sally Majid at the Child Growth Foundation
Claire Whitehill at CSNK2A1 Foundation
Despina Dinca at NAA Advocacy
James Buller at Aniridia Network
Jill Prawer at Action FCS
Jo Wright, Parent Rep at SWAN UK
Kate Bailey
Kaustubh Adhikari, Sophie-Mira Roberts and Echo Dyer at The GRACE Project
Libby Roper and Liz Ryburn at SMA UK
Louise Baxendall at Sheffield Diagnostic Genetic Service
Mel Dixon at Cure DHDDS
Mike Cain at HSP Support Network
Miranda Lloyd at The Neurological Alliance
Nigel Over at Cerebra
Phillippa Farrant at Wolfram Syndrome UK
Rhys Holmes at Living with Superficial Siderosis
Thea Palmer at NAIT Babies
The GenPAN Network