17th March 2020, 6.30 – 8pm, Hadyn Ellis Building, Maindy Road, Cardiff CF24 4HQ Before the screening there will be a Public Genomics Cafe at 5 to 6.30pm at the same venue – all welcome. A screening of winning films from the Rare Disease UK Film Festival 2020. This screening will feature some of the winning films… Read more »
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Public Genomics Cafes, March: Llanelli, Cardiff & Newport
10th March, 10am -12pm Costa Coffee, (drop-in) Pemberton Retail Park, Llanelli SA14 9UZ 17th March, 5pm – 6.30pm (drop-in), Hadyn Ellis Building, Maindy Rd., Cardiff CF24 4HQ 18th March, 11am -1pm (drop-in), The Riverfront, Kingsway, Newport NP20 1HG Are you affected by a rare or genetic condition? Are you interested in finding out more about… Read more »
Congenital Anomaly Register and Information Service (CARIS) Annual Report 2019
The Congenital Anomaly Register and Information Service (CARIS) was established in 1998 as a register of congenital anomalies in Wales, and has always included some rare diseases of genetic/hereditary origin. It sits within the Health Intelligence Division of Public Health Wales. CARIS aims to provide reliable data on congenital anomalies in Wales which can be used to assess patterns of… Read more »
Register now: Rare Disease in Wales – Senedd Reception 25th February 2020
Join Genetic Alliance UK and stakeholders from across the rare disease community for Rare Disease Day 2020! Rare Disease Day is officially held on the last day of February, aiming to raise awareness of rare diseases and improve access to care, treatment, information and support. Throughout February and March, we host our three annual receptions to mark Rare… Read more »
Rare Film Festival Awards Ceremony, London, 10th Feb. 2020: Tickets Available
Tickets are now on sale for Rare Film Festival! Held at the Regent Street Cinema, London, on Monday 10 February, the Rare Film Festival is your chance to take part in the UK’s first ever film festival dedicated to rare conditions. Tickets are available from £30 for Rare Disease UK supporters. Hurry as places are… Read more »
Activities for Rare Disease Day 2020 – get involved!
Rare Disease Day Webinar: 29 January 2020 Find out about how you can get involved with Rare Disease Day by joining Rare Disease UK’s webinar on Wednesday 29 January from 13:00 to 14:00. We will discuss how you can access materials (posters, infographics and much more) to raise awareness of rare conditions. Please contact Jurrat to sign… Read more »
Involvement opportunity: Improving Mental Health Support for Children with Rare Genetic Conditions
Cerebra, a charity who support children with brain conditions and their families, have collaborated with Cardiff University to improve mental health support for children with rare genetic conditions which often cause developmental and intellectual delay. Research shows that children diagnosed with these genetic conditions are more vulnerable to psychiatric problems, however they often do not… Read more »
Second Meeting of National Assembly for Wales Cross Party Group for Rare, Genetic and Undiagnosed Conditions
Members of the Cross Party Group (CPG) for Rare, Genetic and Undiagnosed Conditions met for the second time in the National Assembly for Wales on January 14th to discuss the report recently launched by Genetic Alliance UK, ‘Action for Access’. The meeting was attended by representatives from the rare disease community including member organisations, the Cystic… Read more »
Register now: Rare Disease in Wales – Senedd Reception 25th February 2020
Join Genetic Alliance UK and stakeholders from across the rare disease community for Rare Disease Day 2020! Rare Disease Day is officially held on the last day of February, aiming to raise awareness of rare diseases and improve access to care, treatment, information and support. Throughout February and March, we host our three annual receptions to mark Rare… Read more »
Public Genomics Cafes: Cardiff – book now
Mon 2 Dec 2019 11am to 1pm (drop-in), Coffee #1, The Friary (off Queen Street, Cardiff CF10 2PB Are you affected by a rare or genetic condition? Are you interested in finding out more about genomics and health? Join us for the Genomics Café in Wales! This initiative is being run by Wales Gene Park… Read more »