On Wednesday 9 December 2015 our Policy Officer, Louise, attended the first ever UK National Screeni…
Last Friday, over 80 patients, families, patient organisations and health professionals gathered for the 2nd Annual Patient Day for Inherited Eye Disease in Wales.
The event included presentations from prestigious speakers within the field presenting on topics such as access to genetic counselling services, access to work, the Wales low vision service and research priorities. Alastair Kent, Director of Genetic Alliance UK, provided an update on the progress made so far in implementing the UK Strategy for Rare Diseases.
Genetic Alliance UK has been working with a group of patients in Wales affected by a number of different rare inherited eye diseases to develop a patient support group. A key element of the day was an opportunity for patients to meet with others with the same rare condition. There was also a patient panel and Q&A session with the audience.
If you would like to develop support for your organisation within Wales, please contact our Development Officer, Wales, Emma Hughes, for more information.