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