Rare Diseases Ireland

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. We advocate for, empower and engage organisations and advocates, as well as people living with rare diseases, their carers and their families, to mobilise together with a strong voice to shape policies and solutions driven by the needs of all people living with rare diseases. Our vision is a country where all people living with rare diseases live longer and better lives, reaching their full potential, and are included in a society that leaves no one behind. This means we want equity for people living with rare diseases in Ireland – equitable access to diagnosis, treatment, health and social care and opportunity.

Pharmaceutical, medical devices and in vitro diagnostics regulations and legislation
EU wide Action plan for rare diseases
Clinical trials regulations
European Health data space
European Reference Networks
Rare disease research

www.rdi.ie

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No lobbyists with EP accreditations

None declared

Data not provided by Register Secretariat due to GDPR

Data not provided by Register Secretariat due to GDPR

Non-governmental organisations, platforms and networks and similar