Rare Diseases Ireland

Acronym: RDI

General Information

Identification Code: 309832251878-17

Website: www.rdi.ie

Entity Form: Organisation

Registration Category: Non-governmental organisations, platforms and networks and similar

Registration Date: 11/8/2023

Mission & Interests

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.

Interests Represented: Promotes their own interests or the collective interests of their members

Interests:

Public health
Research and innovation

Levels of Interest:

national
european

Activities

Main EU Legislative Proposals: 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

Communication Activities: None

Inter-institutional or Unofficial Groupings: N/A

Head Office

Address: Carmichael Centre, Brunswick St N

Post Code: D07 XW62

City: Dublin 7

Country: IRELAND

Phone:

Indic Phone: 353

Phone Number: 879334829

EU Office

Address: Carmichael Centre, Brunswick St N

Post Code: D07 XW62

City: Dublin 7

Country: IRELAND

Phone:

Indic Phone: 353

Phone Number: 879334829

Financial Data

Closed Year:

Start Date:

End Date:

Funding Sources:

Contributions:

Total Budget: 0

Grants:

Current Year:

Grants:

Membership Information

Members10 Percent: 1

Members: 1

Members F T E: 0.10000000149011612

Structure

Structure Type: Structure

Is Member Of: 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

Organisation Members: EURORDIS - Rare Diseases Europe