Northern Ireland Rare Disease Partnership (NIRDP)

Northern Ireland Rare Disease Partnership (NIRDP) is a voluntary organisation formed in 2012 with the vision that ‘no-one is disadvantaged due to the rarity of their condition’. There are approximately 8,000 rare conditions affecting 1 in 17 people in NI. NIRDP voluntary committee works on a range of projects to advocate, connect, educate and innovate on behalf of the rare disease community. One of the key projects is a virtual support hub supporting those living with and those caring for people with often very challenging and complex medical needs.

Mentor: WomensTEC

NIRDP applied to the Elevate programme to focus on raising awareness of their work and the needs of the 110,000 people living with rare conditions in NI including the inequalities they face when accessing reliable information and appropriate treatment. NIRDP identified several areas to focus on including reviewing existing promotional materials and their social media presence, and promoting the policy driven areas of their work.

The mentoring support and funding from the project enabled NIRDP to produce new promotional material including information leaflets which have been circulated broadly to member groups for cascading, during both NI events and joint NI/South of Ireland Events and throughout the healthcare community. They were also able to develop new impactful designs for information banners and host meetings with the Rare Disease forum to discuss graphic designs for potential merchandise that will become the basis for a social economy project.

A key part of the mentoring support provided by Women’s Tec was on Social Media Marketing.  Women’s Tec Social Media Officer Lisa supported Edel and the team at NIRDP on social media planning, resourcing and management and signposted them to more advanced social media training.

The funding and support provided by the Elevate Programme also contributed towards NIRDP successful lobbying for the establishment of an All-Party Group (APG) for Rare Disease at NI Assembly. The APG was established in February 2022 and will bring the issues and needs of the rare disease community, including the inequalities they face directly, onto the agenda of all political parties in NI. NIRDP and those living with rare disease will have a voice at the highest political arena within the country.


NIRDP has seen an immediate direct impact on awareness raising including creating more impactful social media posts that have enabled them to reach a wider audience on social media, promote the work of NIRDP on a broader scale and highlight the needs of their community.  Redesigning their promotional leaflets has allowed NIRDP to share information about the support they provide to people in NI living with a rare disease.  It has enabled them to engage with the most vulnerable members of the community who would not have access to social media and who are not IT literate.

NIRDP has said the project has made a huge impact at the highest level in NI.  The rare disease community is often overlooked or made to feel invisible with limited services available.  Establishing the APG with the support of the Elevate Programme has allowed NIRDP regular and ongoing opportunity to bring the needs of the community right to the heart of NI government.

In community development we must never forget Margaret Mead’s words, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has”.  Then take a relatively small pot of money and a dollop of support, innovatively used, which can amplify the voices of that small group to achieve a huge change.  That was indeed the case for the Northern Ireland Rare Disease Partnership, and we successfully created that change with, and on behalf of our rare community, of more than 110,000 people across Northern Ireland. Our thanks go to the CDHN Elevate programme for its amplification!

Rhoda Walker, Volunteer, NIRDP