Get involved with Undiagnosed Children’s Day 2022 on Friday April 29th! To find out more about any of the activities email info@undiagnosed.org.uk
SWAN (Syndromes Without a Name) UK Undiagnosed Children’s Day 2022: 29th April
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Virtual Public Genomics Café: 26th April, 11am – 12.45pm. Book now!
April’s café will feature relaxed talks including: Mini-guts for Cancer Research Angharad Walters & Becky Truscott, Inherited Tumour Syndromes Research Group, Cardiff University An update on the new All-Wales SWAN (Syndromes Without a Name) clinics Dr Graham Shortland, Rare Disease Implementation Group Involving Patients to Shape Genomics in Wales Genomics Partnership Wales An Update from… Read more »
Recruiting now! Project Officer, Training Officer & System Administrator roles within Wales Gene Park
Project Officer (within Education & Engagement Team) – closing date 21st March 2022 Training Officer (within Education & Engagement Team) – closing date 27th March 2022 System Administrator – closing date 27th March 2022
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 »
Young People’s Genomics Café, 3rd March 2022, 6-7.30pm – book now!
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: A Genomic Fairy Tale: how is genomics represented in the media? Rhys Vaughan, Wales… Read more »
Rare Disease Day Welsh Reception 22nd Feb 2022, 6 to 8pm – book now!
Genetic Alliance UK would like to invite you to a reception on 22 February, 6-8pm to mark Rare Disease Day 2022. Rare Disease Day is an annual international event raising awareness on the needs of people living with conditions. There are over 6000 rare diseases affecting 175 000 people across Wales. Collectively, rare diseases are… Read more »
Virtual Schools’ Genetics & Genomics Roadshow Spring 2022 – book now!
Now in its 12th year, Wales Gene Park’s Schools’ Genetics & Genomics Roadshow has gone virtual for the first time! What is the Roadshow? The Roadshow offers free talks to your school or college’s year 12 & 13 biology/science students During the live roadshow sessions expert speakers (usually two per event) will speak on topics… Read more »
Register now: Welsh Parliament Cross-Party Group meeting on Rare, Genetic and Undiagnosed Conditions 26th Jan 2022
Attend the Welsh Parliament Cross Party Group meeting on Rare, Genetic and Undiagnosed Conditions on 26 January, 11.00-12.30 via Zoom. The topic of discussion will be on getting a faster diagnosis and care coordination for rare conditions. Register to attend by emailing contactus@geneticalliance.org.uk Speakers: Russell George MS, Chair of the Wales CPG on Rare, Genetic and… Read more »
Unique You Project – Public Involvement Opportunity!
Are you a member of the cancer community? Do you feel the science of cancer could be better explained? Can you tell us how improved knowledge could help you? Then get involved in the Unique You project. Cancer researchers at Cardiff University need your help to create tools to be used with the cancer community at… Read more »
Virtual Public Genomics Café: 1st February, 11am – book now!
Tuesday 1st February 2022, 11am to 12.45pm, via Zoom. February’s café will feature relaxed talks including: Share Your Rare: a creative project exploring the experience of living with a rare condition – Dr Samuel Chawner, MRC Centre for Neuropsychiatric Genetics and Genomics, Cardiff University, Neus Torres Tamarit and Ben Murray, Phenotypica Rare Disease Day 2022:… Read more »
