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News & Events

News

RDI News & Events

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

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

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

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 

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© Rare Diseases Ireland 2021

  • Home
    • Welcome: Kevin Whelan, Chair RDI
    • About RDI
      • Board of Directos
      • Scientific & Medical Advisory Board
      • RDI Audited Accounts
    • RDI History
    • Contact Us
  • Patients & Families
    • What is a Rare Disease?
    • Patient Organisations
    • Undiagnosed Rare Disease Patients
    • Raise Awareness
    • Make Your Voice Heard
    • Tell Your Story
    • Clinical Trials and Research Studies
    • Rare Disease Day
  • Patient Organisations
    • Advocacy
    • Education
    • A Home for ALL Rare Diseases
    • Putting the Patient at the Centre
    • Become a Member
    • Contribute to ‘beyond 2018 RD Plan’
  • Clinicians & Researchers
    • Resources for your Patients
    • National Rare Diseases Office
    • European Reference Networks
    • Rare Diseases in Ireland
  • Industry
    • RDI – Round Table of Companies
    • Members
    • Meeting Schedule
    • Code of Conduct
    • Sponsor an Event
    • Internship Opportunities
  • News & Events
    • News
    • Events
      • #Drive4Rare
      • AGM 2021
  • DONATE
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