2010 – 2012
Representatives of small charities and individuals recognised the shared common issues and experience, and the value of working collectively.
Supported by Patient and Client Council.
Created a not for profit company limited by guarantee.
NIRDP launched by health Minister, Edwin Poots, on rare Disease Day 2012, along with consultation open UK rare disease plan.
2013 – 2014
Started co-hosting rare disease day events on all island basis: 2013- City Hall, Dublin; 2014- Riddel Hall, Belfast.
Member of UK rare disease forum
Started contributing to medical education for 1st and 5th year students at QUB.worked with RCGP on the development of the “What I need you to know” patient passport.
Launch of “Living everyday with rare disease survey”- a baseline for further work.
2015 – 2016
Registration by Charity Commission
Rare Disease Implementation Plan for NI- we held joint meetings across NI and a tweet chat to gather views
Delivered responses to a range of strategic consultations
Family Fun Day
Establishment of NW group
Clinics for Multiple Systems Atrophy and 22q12 launched.
Presented on “patient engagement” at a rare disease conference in Brussels, and on rare disease issues at a patient engagement conference in London.
2017 – 2018
Regional meetings focussed on information and communication needs.
Award from National Lottery for project to support families across NI.
Presented poster at Orphan Drugs conference in Brussels and attended EURORDIS conference in Edinburgh.
Joint presentation with Department of Health at patient involvement conference in Belfast.
Events in Bangor and Foyle to mark rare disease day.
The 4th joint conference had significant coverage on NVTV.
2019 – 2020
Drew to a close the pilot for the Stronger Together Programme March 2020
Hosted Joint North-South Rare Disease Day Event in Riddel Hall, Belfast February 2022
Launched the Stronger Together Virtual Support Hub
NIRDP a regional representative on the Northern Ireland Rare Disease Action Plan Implementation Group.
Took part in the Northern Ireland Science Festival with an Interactive Pop Quiz for schools.
Supported rare disease training programme for student nurses delivered through the University of Ulster
2021 – 2022
Delivered, with partners the “First Steps into a Career in Rare Disease” through the STEM initiative
Delivered “Rare Aware” information sessions to the Royal College of General Practitioners, the NI Community Pharmacy Group, the Healthy Living Centre Alliance.
Successfully drew down funds to employ a part-time videographer to capture the voice of the rare community.
Supported the lobbying initiative to gain access to Risdiplan for the Spinal Muscular Atrophy community in NI
Successfully drew in support to employ the organisation’s first ever Chief Executive Officer
Successfully drew down funds to employ a part-time videographer to capture the voice of the rare community.
Worked closely with the Department of Health and other key stakeholders on the NIRDIG to produce and launch the Rare Disease Action Plan for Northern Ireland in March 2022.
Successfully established the first All Party Group for Rare Disease at the Executive at Stormont
2022-24
2022
February–March:
📌 RariTea Awareness Campaign launched across Northern Ireland during Rare Disease Month.
Ongoing:
🛠 Outcomes Star was adopted by NIRDP to support individual planning and measure progress in service delivery.
2023
Throughout the Year:
🎓 Understanding Rare CPD training rolled out for mental health professionals and helpline staff.
February–March:
☕ RariTea community events continued to engage the public and raise awareness.
June:
📊 First Progress Report on the Northern Ireland Rare Disease Action Plan published.
2024
January & May:
🤝 Contact NI Conferences hosted in partnership with NIRDP to support families and professionals.
February 29:
🇮🇪 North-South Rare Disease Webinar held in collaboration with Rare Diseases Ireland.All-Ireland Rare Disease Event held at Farmleigh House, Dublin, promoting cross-border collaboration and policy alignment.
March:
☕ RariTea events mark Rare Disease Month for the third consecutive year.
2024-25
Key Activities and Achievements
Ongoing Support Services: Continued to provide assistance through our helpline and virtual support hub, supporting 50 families affected by rare conditions, including carers, individuals living with rare diseases, and other stakeholders.
Relationship Building: Strengthened collaborations with helplines and various support organisations to enhance and expand the support network for our community.
Industry Partnerships: Developed strategic partnerships with industry stakeholders to foster innovation and facilitate resource sharing.
Board Strengthening: Enhanced governance by appointing five new members to our Board, bringing diverse expertise and fresh perspectives.
Rare Disease Action Plan Engagement: In partnership with the Department of Health and universities, successfully planned and delivered six engagement events focused on the development of the Rare Disease Action Plan.
National Involvement: Actively participated in the National Implementation of Rare Diseases Group (NIRDIG) to influence policy and implementation efforts.
Disability Strategy Consultation: Engaged in consultations to contribute valuable input toward the development of a comprehensive Disability Strategy.
