Genetic and Rare Disorders Organisation

The Genetic and Rare Disorders Organisation (GRDO) is a non-governmental organisation acting as a national alliance for voluntary groups that represent the concerns of people affected by or at risk of developing genetic or other rare disorders. The mission of GRDO is to provide a strong voice these groups in order to achieve better support and services.

The Genetic and Rare Disorders Organisation acts as a watchdog in relation to legislation concerning disability to ensure that the rights of people with genetic or other rare conditions are protected.

GRDO was incorporated in 1988, and its first achievement was to successfully lobby for a dedicated national centre for medical genetics, which was established at Our Lady’s Hospital Crumlin in 1994.

The objectives of the GRDO are:

• to voice and promote views of the member organisations on issues of common concern;

• to be a strong and united voice that will increase public awareness of genetic and other rare disorders; and

• to promote further development of genetic services in Ireland.

Fighting Blindness was a founding member of GRDO, as both were initially concerned with rare and genetically-inherited diseases. Although Fighting Blindness now not only focuses on rare diseases but also more common age-related conditions and those caused by lifestyle, the issue of rare disease remains a core interest for us.

Fighting Blindness currently holds the Chair of GRDO, and we are represented on a steering committee which was established in 2011 by the Minister for Health Dr. James Reilly to develop the National Strategy for Rare Diseases in Ireland by 2013.