As many rare conditions only have a small number of people affected in a country there is a lot of collaboration among support groups that represent all rare diseases in Ireland. They support and represent all Irish rare disease interests, even those that are too rare to have their own support group and help to raise awareness of rare disease and give people a voice. They are:
Rare Diseases Ireland (formerly GRDO – the Genetic and Rare Disorders Organisation) is a non-governmental organisation with the mission to act 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 diseases.
Health Research Charities Ireland (HRCI), previously known as the Medical Research Charities Group (MRCG), is the national umbrella organisation of charities active in medical and health research, together representing over 1 million Irish patients. Through support and advocacy, we represent the joint interests of our members, working to improve health and prevent illness through research. We also run the Irish Health Research Forum, bringing together all stakeholders to improve health research in Ireland.We believe that every patient should have the opportunity to participate in health research and that every healthcare professional should be supported in its undertaking. Our members are significant funders and contributors to the research landscape in Ireland. Charity spend on the HRCI/HRB Joint Funding Scheme spend is a small proportion of the overall charity outlay on research. As well as outlay on other research projects and schemes, members also make significant contributions to capacity building and facilitate the translation of new learnings from the lab to the clinic.
IPPOSI - Irish Platform for Patients' Organisation, Science & Industry.– involves patients in policy and medicines development.
NRDO maintains a listing of Irish rare disease patient support groups on Orphanet, the rare diseases knowledge-base. You can search for a group here or contact us for more information. Groups listed on Orphanet are patient-led, offer support for rare diseases, have public information, and are listed on the Irish charity register.
