Rare Diseases Ireland: Building on a 30 year past to create a better future
Rare Diseases Ireland (RDI) is the National Alliance for Rare Diseases in Ireland and its objective is to represent the voice of those who have or are at risk of developing a rare disease. The organisation was established by patients and volunteers in 1988 as the Inherited Disorders Organisation (IDO) in order to advocate in the first instance for the establishment of a national center for medical genetics, which opened at Our Lady’s Children’s Hospital Crumlin in 1994. The voluntary group also acted as a watchdog against the practice of genetic discrimination and was an active voice in the development of policy to meet the needs of the rare disease community on issues concerning, access to a diagnosis and the appropriate medical and social care.
Changing its name to GRDO – the Genetic & Rare Disorders Organisation it successfully advocated on issues affecting the rare disease patient community, providing advocacy for fair and enlightened public policies; education for patients, their families, medical professionals and the public; and leadership and representation for its member patient organizations.
We must remember that each individual rare disease patient community, widely dispersed and relatively small in number, had to strive to come together to advocate for their needs. This was facilitated primarily through European disease specific groups. In 1997 the individual European rare disease organisations came together with the national rare disease umbrella groups to establish EURORDIS – Rare Diseases Europe. RDI was one of the first members of EURORIDS.