For Public – News

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 »