Finding your way: A Parent’s Guide to Rare Disease
Finding your way: A Parent’s Guide to Rare Disease
Written by parents, for parents, this new guide offers practical support, trusted resources and hope for families navigating a diagnosis of a rare genetic condition.
We are delighted to welcome you to the national launch of this guide called Finding your way : A Parent’s Guide to Rare Disease.
Join us to hear the stories behind the guide, and learn from parents Adam Clatworthy and Mel Dixon about their own quest to find the right support. They will be sharing their personal experiences to help families to feel less alone.
This booklet is written by Adam and Mel and is supported by both Unique and the NHS South East Genomic Medicine Service.
Register for your place here
