There are many rare diseases and many differences yet most people with a rare disease experience the same issues such as delays in diagnosis, as lack of access to services, isolation and no access to treatment or cure. We in the rare community are working together to raise awareness of the challenges and needs of all people diagnosed with a rare disease.
77% of people who have a rare disease have a genetic component. For some people with a rare disease they can have a genetic test to diagnose the disease. The long delays have a huge impact on families. Our genetic service is underfunded . Please support the campaign.
Regional Health Area F on Monday, April 17th at 12 noon.
Registration details for RHA F (Donegal, Sligo, Leitrim, Roscommon, Mayo and Galway) https://www.eventbrite.ie/e/get-rare-aware-briefing-rha-f-tickets-603747393707.
Read more and take action directly through the website: https://www.getrareaware.ie/