Rare Disease Day in Ireland ?
Ireland first participated in Rare Disease Day in 2008. Over the years, patient organisations have held public information days and conferences to bring together all patient organisations across the country. In 2016, support groups gave families a chance to connect with one another and a conference on rare disease was sponsored by the Irish Department of Health and held at Dublin Castle.¬†The Rare Disease Taskforce, compiled of members from GRDO, IPPOSI and MRCG¬†welcomed attendees to hear invited speakers on the theme of Patient Voice and how technology is helping that voice be heard.¬†
The Genetic and Rare Disorders Organisation (GRDO) is the Irish National Alliance representing the views and concerns of those living with a rare disease in Ireland. They can be contacted directly to help you find a patient organisation locally which may have more information about a specific rare disease or disorder. Find their contact information at the bottom of this page.
Do you know of any events not listed here? Or would you like to get involved? Email us at firstname.lastname@example.org.