On Thursday 14 February, Genetic Alliance UK held the first of its 2019 parliamentary receptions in the Senedd, Cardiff, hosted by Darren Millar AM. The event was well attended by stakeholders from across the rare disease community. During the reception attendees were provided with an update on progress made delivering the Welsh Rare Disease Implementation Plan from... Read more »
Visit the Genomics Partnership Wales webpage to find out more about its work to establish a united approach to genomics in Wales and access the latest newsletters.
To mark Rare Disease Day 2019, which will take place on February 28th, Rare Disease UK launched its campaign to Illuminate the #RareReality. At the recent Rare Disease UK Welsh Senedd Reception Amy Griffiths, SWAN UK representative for south Wales, and Dr Jayne Spink, CEO Genetic Alliance UK, and helped get the #RareReality campaign underway. ... Read more »
Genomics Partnership Wales are working together to harness the potential of genomics to improve the health, wellbeing and prosperity of the people of Wales. We were established to implement the Welsh Government’s Genomics for Precision Medicine Strategy and are now seeking the experiences of patients and the public to ensure that our work has impact... Read more »
30 January, 10:30 – 14:00, Main Building, University Hospital of Wales, Heath Park, Cardiff CF14 4xw Rare Resources: Design the Toolkit Calling families in Wales! Received a diagnosis of a rare, genetic or undiagnosed condition? We need your experience to help us design an information toolkit for other families in Wales. Genetic Alliance UK, the charity... Read more »
The latest issue of Heath and Care Research Wales’s @Researchwales magazine, which showcases Welsh Health and Social Care research, is now available Wales Gene Park features in the article ‘Developing the Next Step for Genomic Diagnostics in Wales‘ on page 10 of the publication.
Thursday 7th February 2019, 17.30 – 20:30 Haydn Ellis Building, Maindy Road, Cardiff CF24 4HQ As part of our activities to mark Rare Disease Day 2019, join us for a FREE film screening of Wonder, based on the New York Times best seller. Wonder is the story of August Pullman, a boy with facial differences... Read more »
Rare Disease Day Welsh Parliamentary Reception 2019 – hosted by Darren Millar AM 6pm – 8pm, Thursday 14 February 2019, National Assembly for Wales, The Senedd Cardiff, CF99 1NA Registration is now open for this year’s Welsh Parliamentary Reception at the Senedd to mark Rare Disease Day. The theme for 2019 is: ‘Bridging health and social care’. The event will include... Read more »
The Wales Gene Park Annual Report 2017- 2018 is now available here The report shows how Wales Gene Park has evolved and adapted to make the very most in Wales of the opportunities presented by genomics. A major part of what the Wales Gene Park does is to make genomic technologies available to biomedical researchers... Read more »
The fast-moving and exciting areas of genetics and genomics were highlighted as Wales Gene Park took part in the Wales Festival of Innovation 2018. For the third year, the Gene Park’s Education and Engagement team delivered a series of events to coincide with the two week-long festival, which showcases innovation in Wales to a range... Read more »
As the NHS marks its 70th anniversary this summer, Health and Care Research Wales looks at Wales’ pioneering role in this type of ‘precision medicine’ – and what this might mean for us all in the future, in their article ‘Wales’ Role in the Genomic Revolution‘.
Are you or your family member affected by or at risk of a genetic condition? Want to improve the quality of genetic counselling services and how they communicate with patients? At Cardiff University, we are seeking the views of people from families affected by genetic condition, but who have NOT (yet) had genetic counselling themselves,... Read more »
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Wales Gene Park has been named as winner of the ‘Outstanding Contribution to Engagement’ award at Cardiff University School of Medicine’s inaugural STAR awards ceremony. The awards, which recognise the achievement of excellence by members of staff across the School of Medicine, were presented by Jayne Dowden (Chief Operating Officer, Cardiff University) at Cardiff’s City... Read more »
Wales Gene Park collaborates with NHS Wales in a number of key areas. We collaborate in NHS-driven research projects, we help in the development of infrastructure to improve their diagnosis of various genetic diseases, and we provide hands-on training to key NHS research staff to ensure they can make best use of high-throughput sequencing technology.... Read more »