About the GRDO
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.
To promote further development of genetic services in Ireland .
To lobby for the availability of adequate care services in Ireland .
To promote equality of educational and employment opportunities.
To facilitate the exchange of information between member organisations
To represent the needs of its member organisation to the statutory and other bodies.
To establish a liaison with geneticists and other relevant specialists nationally and internationally to help GRDO achieve its aims and objectives.
To encourage scientific research in the area of genetics and other rare disorders
The Genetic and Rare Disorders Organisation (GRDO) is a non
governmental organisation acting as a national alliance for voluntary
groups representing the views and concerns of people affected by or at
risk of developing genetic or other rare disorders.
The mission of the Genetic and Rare Disorders Organisation is to provide a strong voice for voluntary groups representing people with or at risk of developing genetic or other rare disorders 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
medical genetics which was established at Our Lady’s Hospital Crumlin
The objectives of the GRDO are:
Disability Federation of Ireland DFI www.disability-federation.ie
European Rare Disorders Organisation EURORDIS www.eurordis.org
European Platform for Patient Organisations, Science, and Industry, EPPOSI www.epposi.org
European Patient Forum Policy Advisory Board www.eu-patient.eu
Irish Platform for Patient Organisations, Science and Industry IPPOSI www.ipposi.ie
Medical Research Charities Group MRCG www.mrcg.ie
Incidence of Rare and Genetic Disorders in Ireland
A rare disorder is a disorder affecting fewer than 1 in 2000 people. The European Union Committee of Experts on Rare Diseases (EUCERD) estimates that between 6% and 8% of the population are affected by rare disorders, i.e. 270,000+ people in Ireland. 80% of rare disorders are of genetic origin, with many affecting children. No cure exists for the vast majority of rare disorders.
Newsletter 2011 - 2012 - click here
Newsletter 2010- click here
Newsletter 2009 - click here
Newsletter 2008 - click here