RDI News & Events

Feb 26 2025 – Rare Disease Day at the Oireachtas

Nov 8 2024 – Patient representatives welcome the announcement of funding for rare diseases

Jul 10 2024 – Launch ‘Manifesto for Rare Diseases’

Feb 29 2024 – Rare Disease Day at Farmleigh House, Dublin – Looking to the future for rare diseases

Dec 7 2023 – Patient Representatives Welcome the Development of a New Rare Disease Strategy for Ireland

Mar 23 2023 – Ending the Wait – Actions to reduce the waiting list for Ireland’s genomics service

Dec 15 2022 – Infographic – Burden of RDs in Ireland

Oct 10 2022 – RDI AGM – recording of AGM

Sep 16 2022 – ISHG conference – poster “Testing and Clinical Genetic Services in the Republic of Ireland”

May 23 2022 – Awareness & opinions of Irish people to Newborn Bloodspot Screening.

Jan 31 2022 – publication “Rare Reality: Living with a Rare Disease in Ireland – Healthcare Experiences”.

Oct 19 2021 – RDI AGM – register to attend

Sep/Oct 2021 – RareReality – healthcare experiences survey

Sep/Oct 2021 – UN #Resolution4Rare

Sep 18 2021 – #Drive4Rare/ #PeterTrys32Counties

May 26 2021 – RDI at Oireachtas Joint Committee on Health

Feb 28 2021 – Raise A Toastie for Rare Disease Day

Feb 25 2021 – Rare2030 Policy Recommendations

Feb  1  2021 – Launch of RDI on-line Donation page

Dec 18 2020 – Newsletter: A Year in Review

May 21 2020 – Research report – Living with a rare Disease in Ireland during the COVID-19 pandemic

Mar 23 2020 – COVID-19 and rare diseases in Ireland

Rare Disease News

Jan 20 2026 – IPPOSI, RDI and UCAN Ireland together welcome today’s announcement from Minister for Health, Jennifer Carroll MacNeill TD, on the successful conclusion of two new Framework Agreements on the pricing and supply of medicines.

Jan 19 2026 – Department of Health launches Expression of Interest for lived experience members on National Rare Disease Strategy Implementation Oversight Group

Nov 21 2025 – Minister for Health launches pulication of recommendations aimed at transforming Ireland’s Clinical Trials Landscape

Aug 27 2025 – Minister for Health launches new National Rare Disease Strategy 2025-2030

Nov 8 2024 – Minister for Health announces additional €5 million funding for rare diseases

Nov 1 2024 – Minister for Health announces €1.5 million to support the development of rare disease services and care

Dec 7 2023 – Minister for Health announces the establishment of the National Rare Disease Steering Group

Aug 26 2023 – Genetic services survey—experience of people with rare diseases and their families accessing genetic services in the Irish Republic

Apr 2023 – Rare diseases deserve equity in the Irish healthcare system

Dec 13 2022 – HSE launches First National Genetics and Genomics Strategy for Ireland.

Dec 9 2022 – Ireland joins with EU countries to endorse Czech EU Presidency Call to Action on rare diseases at EPSCO Council Meeting.

Dec 9 2022 – Czech EU Presidency Call to Action on rare diseases

Apr 11 2022 – Designing rare disease care pathways in the Republic of Ireland: a co-operative model

Feb 28 2022 – HRB announces investment for establishment of rare disease clinical trials network.

Dec 16 2021 – UN adopts first-ever UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families”

Oct 8 2021 – A first for Ireland: gene therapy approved for Irish SMA patients through BeNeLuxA assessment and price negotiation process.

Jul 2 2021 – Review of processes in use to inform the expansion of newborn bloodspot screening programmes

Dec 8 2020 – Prioritisation of Rare Dosease patients for COVID-19 Vaccination

June 16 2020 – Rare Disease Community  highlighted as priority area in Programme for Government

Feb 20 2018 – Launch of The Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease

Feb 16 2018 – EURORDIS calls on European Commission to secure UK Healthcare Providers’ post-Brexit involvement in European Reference Networks

Dec 19 2017 – FDA approves novel gene therapy to treat patients with a rare form of inherited vision loss

RDI in the News

Jan 17 2023 – Irish Examiner

May 24 2022 – RTE Radio 1

May 23 2022 – Irish Times

May 23 2022 – Irish Independent 

May 23 2022 – Irish Examiner

Sep 13 2021 – Offaly Independent

Sep 10 2021 – TodayFM

Jun 30 2021 – The Connaught Tribune 

Jun  8  2021 – Extra.ie

Jun  1  2021 – Newstalk – The Hard Shoulder

Jun  1  2021 – Kfm – Kildare Focus

Jun  1  2021 – Newstalk – Lunchtime Live

May 26 2021 – Irish Examiner

May 26 2021 – Irish Times

Feb 26 2021 – RTE News2Day