Rare Diseases Ireland
Budget
€10 — €0
EP Access
0
accredited persons
Staff
1
0.1 FTE
EU Grants
None
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
EURORDIS - Rare Diseases Europe
Organisation Members
Rare Ireland FSN SMA Ireland HHT Ireland Cystic Fibrosis Ireland Fighting Blindness Cystinosis Ireland Debra Ireland HDAI 22Q Ireland MSA Trust PKU Ireland SBHI Irish Lung Fibrosis Assoc Irish MPS Society Vasculitis Ireland Awareness PSP Asooc Ireland Dravet Syndrome Ireland Noonan Syndrome Ireland SOUND FARA 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.
Commissioner Meetings
No recorded meetings with EU commissioners.