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 »
PLAQUES & TANGLES: A 30-minute podcast drama by Lisa Parry A treatment of the drama can be found here Please note: not to be shared publicly
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 »
Virtual Event – 14th May Opportunity for involvement! Would you like to be involved in Genomic Partnership Wales’ biggest event of 2021? The Genomics Showcase will take place virtually on 14th May 2021 and we want to offer charitable organisations the chance to be part of it. What is the Genomics Showcase? The Genomics Showcase… Read more »
Rare Disease UK would love you to be part of Rare Disease Day 2021, here’s how you can get involved: Talk to them on social media: The easiest way to take part in Rare Disease Day 2021 is to make sure you are following Rare Disease UK on Twitter, Facebook and Instagram so you can re-share… Read more »
When: Wednesday 24 February, 10.00 – 12.00 via Zoom Sign up here: http://eepurl.com/ho7qA5 Plans for this year’s Rare Disease Day activities are well underway albeit a little different to usual. This year the annual event will be a joint parliamentary event with the other nations of the UK and will focus on the implementation of… Read more »
Join Wales Gene Park on Monday 15th Feb, at 2pm for a FREE public talk on the social history of vaccination and discussion session on what it means now for Covid. Please note: Due to high demand, this is a repeat of the talk given on the 28thh & 29th January 2021. Please book early… Read more »
Come and join the wider team and help guide the direction of Wales Gene Park as a patient and public representative on our Strategic Advisory Group. For more information about the role, reimbursement and how to apply – please take a look at the advert below: Role Description Patient & Public Representative, Strategic Advisory Group, Wales Gene… Read more »
Are you a young person interested in finding out more about genomics and health, or affected by a rare or genetic condition? Join us for Young People’s Genomics Café! These events are aimed at those aged 16 to 25 and are run by Wales Gene Park with Genomics Partnership Wales. At February’s café we have… Read more »
Genomics Partnership Wales (GPW) would like invite Nurses and Midwives in Wales to share their opinion about the impact of genomics in your area of work. Your responses will help inform future education and training initiatives and preparation of our workforce in line with the Welsh Government’s Genomics for Precision Medicine Strategy. Although some nurses… Read more »
