Rare Disease News

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