Are you a young person interested in finding out more about genomics and health, or affected by a rare or genetic condition? Join us! These events are aimed at those aged 16 to 25. March’s café will feature relaxed talks including: Co-occurring conditions in autism – the who and the why Dr Jack Underwood, Cardiff… Read more »
For Patients – News
The podcast drama Tremolo – a collaboration between Wales Gene Park, Illumine Theatre and Theatr Genedlaethol Cymru, supported by the Genetics Society – has been nominated for two BBC Audio Drama Awards! The awards celebrate the range, originality and cut-through quality of audio drama on air and online and give recognition to the creativity of actors,… Read more »
As 2022 draws to a close, it is a pleasure to share with you a few highlights from Wales Gene Park, demonstrating the breadth of our activities and inviting you to contribute to future highlights.
Genomics is amongst the most exciting arenas of 21st century healthcare and will give us previously unimaginable opportunities to better understand illness, improve patient outcomes and transform lives. Personalised medicine, testing and other genetic adaptations and innovations using new methods, tools and technologies will shape the future of modern medicine. The Genomics Delivery Plan for… Read more »
Find out from Louise Fish, Chief Executive Genetic Alliance UK, how you can raise awareness and help highlight rare diseases in February 2023.
Britain’s first SWAN (syndrome without a name) Clinic has opened at the University Hospital of Wales — offering hope to children and adults with syndromes so rare they don’t have a name. Commissioned by Welsh Health Specialised Services Committee (WHSSC) and funded by Welsh Government, the SWAN Clinic has been established by Cardiff and Vale… Read more »
The Wales Gene Park Annual Report 2021 – 2022 is now available here. Welsh version of Wales Gene Park Annual Report 2021 – 22 can be found here
The families of people with rare diseases may have to undertake a long journey to find a to find a diagnosis (often called a diagnostic odyssey); there may be ignorance of their condition and as a result their care may be uncoordinated and individuals might not have access to the best treatment options. The Wales Rare Diseases… Read more »
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 »
A cancer patient in Wales, who had not reacted well to the standard cancer therapy, was facing a situation of having very limited treatment options available to them. Analysis of their cancer’s genomic data provided a new avenue of treatment. Just before Christmas 2021, they were able to be recruited to a clinical trial for… Read more »