For Patients – News

Genetic Alliance UK Launches Good Diagnosis Report

To coincide with Rare Disease Day 2022, Genetic Alliance UK has launched a new report, ‘Good Diagnosis: Improving the experiences of diagnosis for people living with rare conditions’. Read the full report here. PRINCIPLES OF GOOD DIAGNOSIS The experience of diagnosis is, at its essence, a very personal and individual experience. There is no one… Read more »

Tremolo – a podcast drama by Lisa Parry. Available now!

If you knew you could have a serious medical condition and could find out, would you? How could this affect your friends and family? These questions and more are explored through Harri’s story, an 18-year-old who’s just finished his exams and ready to follow his dreams. His world is turned upside down when his mother is… Read more »

New £15m genomics facility for Wales is given go ahead

    Cardiff University’s Wales Gene Park is to partner with three organisations to develop a new £15.3m state-of-the-art genomics facility in the Welsh capital, it was announced today. Genomics Partnership Wales has been granted Welsh Government approval to develop the centre at Cardiff Edge Life Sciences Park in Coryton. Wales Gene Park, which is… 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 »