For more than 11 years, the Northern Ireland Rare Disease Partnership (NIRDP) has forged strong links between patients, patient organisations, the Department of Health, clinicians, scientists, researchers, the healthcare industry, support services, government ministers, and policy-makers.
In developing and strengthening these relationships, NIRDP has become the primary contact for patients interested in engaging more actively in the Research and Development process.
We advocate for early and equitable access to health innovation for patients and more Public Patient Involvement opportunities.
In 2024, the Northern Ireland Rare Disease Partnership established the Northern Ireland Rare Disease Partnership Corporate Council (NIRDP-CC) – a round table of industry members with a common interest in rare diseases, ultra-rare diseases, and orphan products. It meets online twice a year and invitations are extended to a delegate from each Corporate Council member to attend the annual Rare Disease Day as a guest of NIRDP.
The NIRDP-CC provides a unique opportunity for industry members across a range of products, technologies, and services to engage with experts in the rare disease community in Northern Ireland addressing topics of mutual interest.
Membership of the NIRDP-CC reflects an industry member’s philanthropy, leadership, and commitment to identifying, treating, and curing rare diseases in Northern Ireland through education, advocacy, research, and service programs.
The NIRDP-CC provides a conduit for industry to engage with rare disease patient organisations to identify and prioritise challenges facing the 110,000 people in the rare disease community of Northern Ireland.
Partnering with our robust network of expert patients, our Industry members play a key role in ensuring that the patient voice is at the center of all health innovation in Northern Ireland.
Read more about the Benefits of Membership.
We have become stronger thanks to our industry members who support the Northern Ireland Rare Disease Partnership in its work.
All Corporate Council members are required to sign up to Terms of Engagement in line with the Association of the British Pharmaceutical Industry (ABPI) Code of Conduct as part of the membership process.
Read more about Terms of Engagement.
If you would like to learn more and join the NIRDP-CC please contact our Partnership Development Officer, Rosaline Callaghan, at rosaline@nirdp.org.uk