Register via Eventbrite to receive the joining link and instructions: shorturl.at/xFIRZ
Welsh Annual Rare Disease Patient Network meeting 2021 – book now
For Public – News
Wales Gene Park Annual Report 2020-2021
The Wales Gene Park Annual Report 2020 – 2021 is now available here
Young People’s Virtual Genomics Café – 20th October 2021. Book now!
Register for the café: https://rb.gy/ew3mdi
Save the Date: 30th June, 12pm-1.20pm, Virtual Parliamentary Briefing on Rare, Genetic & Undiagnosed Conditions
Sponsored by Mark Isherwood MS Join Genetic Alliance UK and supporters to learn more about the work of the Cross Party Group on Rare, Genetic & Undiagnosed Conditions and how the new UK Framework for Rare Diseases aims to improve the lives of those affected by rare conditions. Speakers will include patients and families affected… Read more »
SWAN UK CYMRU LAUNCH
Families in Wales affected by undiagnosed and rare conditions to be better supported thanks to a three year project funded by the National Lottery Community Fund in Wales. About SWAN UK SWAN stands for ‘syndromes without a name’. It is not a diagnosis, but a term used to describe a genetic condition so rare it… Read more »
Dafydd’s story – Rare Disease Day 2021
Louise Wilkinson – Rare Disease Advocate and Genomics Partnership Wales Patient and Public Sounding Board Member – shares her family’s personal experiences of her son Dafydd’s rare condition and diagnosis through genomic testing. Dafydd – One in a Million Dafydd was a happy smiley baby and despite a difficult birth (born 2 weeks early by… Read more »
Publication of Report on Welsh Cross Party Group for Rare, Genetic & Undiagnosed Conditions
A new report has been published by the Welsh Cross Party Group for Rare, Genetic & Undiagnosed Conditions to coincide with the Rare Disease Day 2021 UK-wide Parliamentary Event on 24th February. The Welsh Cross Party Group for Rare, Genetic & Undiagnosed Conditions held its inaugural meeting in the Senedd in September 2019. Over the… Read more »
