In Ireland, 1 in 17 people are living with a rare disease. These rare diseases have a profound impact on the daily lives of affected individuals, their families and carers.
There are many patient organisations in Ireland providing information and support for rare diseases patients and their families across a wide range of areas. These organisations may support research, may in some cases provide counselling and care services, and may also actively provide advocacy and lobbying for equitable access to improved services.
Patient organisations provide a forum for affected patients and their families to educate and support one another. Some rare disease organisations are smaller and may be run voluntarily or on small budgets.
There are currently over XX Irish patient organisations for rare diseases registered on Orphanet.
Rare Diseases Ireland (rdi.ie)
Rare Diseases Ireland (RDI) is the national alliance for rare disease patient organisations in Ireland, working across all rare diseases to improve the lives of the estimated 300,000 people living with rare diseases in Ireland.
RDI is working closely with EURORDIS to ensure that its members are involved in key policy development and to establish an IPAG (Irish patient advocacy) group across Irish ERNs which will network ePAGs with each another and ERN leads in Ireland, share experiences, priorities and foster the next generation of advocates.
Rare Ireland (rareireland.ie)
Rare Ireland is a support group dedicated to working on behalf of the rare community, highlighting the needs of families, children and young adults affected by rare conditions and identifying the areas they can influence change and improve services. They provide support for rare disease families by providing an opportunity for rare parents within the network to connect with each other for support, information and advice.
IPPOSI (IPPOSI.ie) – Irish Platform for Patients’ Organisation, Science & Industry
IPPOSI is a patient-led membership organisation that works with patients, government, industry, science and academia to put patients at the heart of health policy and innovation. IPPOSI are the largest membership-based network of patient organisations in Ireland representing over 100 patient organisations and a substantial group of individual patient representatives.
