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 Disease Day in Wales, England and Scotland. This year the Welsh reception, sponsored by Angela Burns AM, will be held on Tuesday 25th February, 6-8pm at the Senedd, Cardiff Bay and registration is now open via Eventbrite
The event will include an update from the Chair of the Rare Disease Implementation Group, Dr Graham Shortland, progress made, plans for 2020 involving the Cross Party Group for Rare, Genetic and Undiagnosed Conditions, as well as personal insights from a patient affected by a rare pituitary condition.
Canapés and light refreshments will be provided. Please share the invitation with others who may have an interest in attending. Please invite your Assembly Member to join you at the Welsh reception to hear from inspirational speakers and to discuss issues affecting your community.
For more information, you can also contact the Genetic Alliance UK Policy & Engagement Manager (Wales), Emma Hughes – email@example.com.
If you would like to find out more about ongoing activities, you can sign up to join the Rare Disease Patient Network by emailing: firstname.lastname@example.org