Coronavirus (COVID-19)

Rare Disease COVID-19 Survey for groups in Northern Ireland

The Rare Disease Team at Queen’s University Belfast have launched a COVID-19 survey which can be accessed at the following link:  https://www.smartsurvey.co.uk/s/COVID19_RD_Groups/ They are interested in hearing the views of how the pandemic has impacted groups supporting those with a rare disease.  Results of this survey will be used to help improve the accessibility of […]

Petition to extend the furlough scheme for high-risk people who can’t safely return to work

Those with conditions like Behçet’s shouldn’t have to choose between protecting their health or their income. Please sign and share the petition to extend the furlough scheme for high-risk people who can’t safely return to work: https://petition.parliament.uk/petitions/330279 Thank you

Genetic Alliance Patient Experience Survey

The new ‘Rare Disease Framework’, to replace the current UK Strategy for Rare Diseases, will shortly be launched. We all hope that it will help improve inequality across the country, diagnosis, research and coordination of care to name a few. Genetic Alliance UK need to understand (baseline now) the detail of your experiences as a […]