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: Women's Tec

We applied for funding from Elevate to enable us to improve the NIRDP Virtual Support Hub (VSH) offering by training and setting up staff to use the ‘Outcomes Star’ model.  For background ‘Outcomes Stars’ are holistic and empowering tools that are designed to meet the needs for outcomes for measurement, whilst also and crucially addressing health inequalities by improving keywork for service users, in our case the rare disease community. There are many versions of the star, but the VSH team wanted to focus on those that address health and wellbeing. Using the Wellbeing Star as an example – the VSH team and the client will decide together where they are on their wellbeing journey, looking at areas such as ‘managing symptoms’, ‘money’, and ‘lifestyle’ and then identify which areas they want to work on. We were also interested in the opportunity to receive mentoring and training to develop our community development skills and knowledge of health inequalities. 

The VSH team were trained and licensed to use the Outcomes Star in January 2023 and since then have had access to the Outcomes Star Package and have worked hard over the past three months on the Implementation Plan for Outcomes Star by changing the existing patient support Pathways and protocols to embed this new offering. The Outcomes Star is now being used for all new clients to the rare disease Virtual Support Hub 


It has enabled the NIRDP operational team to skill up and have licensing to support the rare disease community with the ‘Outcomes Stars’ approach. The difference to the Rare Disease patient will be very evident but an additional benefit to NIRDP as an organisation is the impact we will be able to demonstrate using the Outcome Stars reporting. It will better evidence our direct work and will be much less time consuming for the operational team.  This project very much involves the individual rare disease patient. Previously the Rare Disease VSH simply provided information, support and advice to an individual, it will now be working in partnership with the service users, which will empower the individual member of the rare disease community.  By using the Outcomes Star, we were able to identify specific areas of need for our community members and provide tailored support to meet those needs. For example, one of our community members had been struggling with mental health issues related to their rare disease, but by using the Well-Being Star, we were able to provide targeted support that helped them to manage their symptoms and improve their quality of life. 

Our mentoring support focused on governance, resilience and impact measurement.  During one group session with our mentor Women’s Tec we were shown how we could present our programmes simply on a Theory of Change Chart for funders.  This was shared with the NIRDP Operational team and will be used as part of bids for future projects.  We also made many new connections with both the CDHN Team, Women’s Tec and the various mentees involved in Elevate this year and we plan to keep in touch with them all going forward. 

Elevate training was extremely beneficial in helping us to develop our understanding of health inequalities and how they impact our rare disease community. We gained valuable insights into how to effectively address these issues and make a positive impact on the lives of those we serve. The training also helped us to develop stronger connections with other groups in our community, which has been invaluable in supporting our work.  The training also helped us in the ‘framing’ of our Outcomes Star offering and indeed previous training in Elevate 2021/2 led the charity to strive to offer a better level of support to the NI Rare Disease Community - i.e. developing Outcomes Star as part of this year’s project 

We will continue to use the Outcomes Star model with all new clients to the rare disease Virtual Support Hub.  As a charity we are also looking to review our mission and values with our relatively new board of directors, completing the health inequalities and community development training and taking part in the mentoring support has been helpful to inform our review and to keep a focus of our charities reason for being. 

"It is an amazing programme and whilst the funding is of course always welcome in the charitable sector what Elevate also offers are real networks, mentorships and opportunities to learn from each other and share. Something you couldn't put a price on (especially coming from a very small charity). A truly invaluable programme that we hope to see continue and take part again in future years."

Edel Rogan, Community Activator, NIRDP