Recent meetings
No recorded meetings with EU commissioners.
Mission & Goals
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.
EU Legislative Interests
Pharmaceutical, medical devices and in vitro diagnostics regulations and legislation Critical Medicines Act Biotech Act EU wide Action plan for rare diseases Clinical trials regulations European Health data space European Reference Networks Rare disease research - ERDERA
Communication Activities
None
Interests Represented
Promotes their own interests or the collective interests of their members
Member Of
The Wheel Irish Platform Patient Organisations, Science & Industry EURORDIS - Rare Diseases Europe Rare Diseases International
Organisation Members
Rare Ireland Family Support Network Spinal Muscular Atrophy Ireland Hereditary Haemorrhagic Telangiectasia Ireland Cystic Fibrosis Ireland Fighting Blindness Cystinosis Ireland Debra Ireland Huntington's Disease Association of Ireland 22Q Ireland Multiple System Atrophy Trust Phenylketonuria Ireland Spina Bifida Hydrocephalus Ireland Irish Lung Fibrosis Association Irish Mucopolysaccharide Society Vasculitis Ireland Awareness Progressive Supranuclear Palsy Association Ireland Dravet Syndrome Ireland Noonan Syndrome Ireland SOUND Ireland Friedreich’s Ataxia Research Alliance Ireland
Additional Information
RDI is based in Dublin Ireland. RDI communicates with EU through membership of EURORDIS and submissions to public consultations. RDI does not travel to EU offices or engage in-person directly with EU officials and/or elected representatives other than by email. There is no specific budget allocated to these activities other than time of CEO.