Gavin Lawler co-ordinates the Irish National Mirror Group (NMG) on rare diseases as Programme Manager within the Health Research Board Ireland. Established only in September 2024, this NMG brings together policymakers, clinicians, academics and—crucially—patient advocates to coordinate Ireland’s national efforts and align them with wider European initiatives such as ERDERA. The group aims to streamline collaboration, co-ordinate resources and ensure that patients’ voices shape both implementation of the forthcoming national rare-disease strategy (to 2030) and Ireland’s engagement in international research and policy-making.
Tell us a little bit about the Irish National Mirror Group.
We are quite new — one of the newer National Mirror Groups. We only recently started with our first meeting in September 2024, and that was really a kick-off meeting to get to know everybody.
Why it’s important for us is that we want to make sure all the national stakeholders are getting around the table together to focus on rare diseases. There’s a lot of work happening nationally, both from the research perspective via dedicated funding initiatives from the HRB, but also within the healthcare system through the National Rare Diseases Office in the Health Service Executive.
We want to bring everyone together. So, we want to have policymakers, government (Department of Health), healthcare providers, clinicians and academics but most importantly, we want to have patient advocates/patients themselves around the table to focus on what’s happening with rare diseases.
Because Ireland is quite a small country, we realised that, we can’t cover everything in the field of rare diseases effectively. So international research and collaboration is key for us to actually succeed. That’s the idea: we think the National Mirror Group is a real way to focus and co-ordinate our national efforts and make sure Ireland is best placed to participate in international collaborations on rare diseases.
The NMG has helped us to bring those people to the same table. It was easier than expected — people are quite engaged. Ireland is developing a new Rare Diseases Strategy at the moment. The previous Strategy ran from 2014 to 2018, and the current one has been in development for the last two years, through a National Steering Group.
So, it has been on the political agenda and an active area in the last few years. Before the new Strategy comes out, this has been a good way to get people around the table, to reflect on the work that’s previously been done, and to gear ourselves up for the next five years with the new Strategy coming out — along with Ireland’s participation in ERDERA kicking off as well.
It was a key moment to have our first National Mirror Group meeting, to get us all prepared nationally, and then look towards the initiatives of ERDERA and what’s happening internationally — making sure everything is aligned. From a research perspective, we want to make sure we are making best use of resources and optimising them, so that we are well placed to participate in international cooperation efforts for rare diseases.
If you look at other National Mirror Groups as an example, did you take some inspiration from them?
We did! Vicki was great — from the UK Mirror Group. I met with her and Joanne, and we had a great meeting regarding their experience which helped us to draft our NMG’s terms of reference. It was fantastic to gain insight into how they operated, what worked well and the pitfalls/challenges they encountered.
They gave us very good advice — for example, rather than involving every single individual stakeholder, to focus on umbrella groups and key stakeholders who can then disseminate information more widely among their own networks which is the approach we’ve implemented.
That made things much easier for us when preparing our terms of reference and deciding how we wanted to operate. So, with our stakeholders, we’ve invited key people that represent multiple organisations, ensuring the NMG members reflect the wider national stakeholders needed to be effective and have impact.
We’ve stated in our terms of reference that we welcome everyone. We’re an open National Mirror Group — it’s not closed, and it’s not a “you-have-to-be-invited” type of group.
The idea is to engage key people who will actively contribute and work together, but who can also share and disseminate messages across their own networks — making sure everyone stays informed.
Internally at the Health Research Board — since we’re the coordinator of the Mirror Group — we’re developing a webpage and resources to facilitate dissemination and direct people who want more information about the Mirror Group or ERDERA.
Being such a young National Mirror Group, I don’t expect there is a high impact yet, but is there already some positive progress?
Yes. The key thing is ensuring people know who the right contacts are — who is the person in the ministry(Department of Health), the health service(HSE NRDO), the funders (HRB etc.), key academics and clinicians, and importantly the patient advocates and groups who can provide insight from the patient’s perspective.
There’s no point designing anything without involving patient advocates from the outset to ensure impact. From the Health Research Board’s perspective, we’ve always emphasised participation and engagement from both the public and patients(PPI).
So, the biggest impact so far has been about getting the right people around the table, recognising who to connect with to get things done, and facilitating face-to-face engagement.
We’ve had our kick-off meeting, and a second meeting with people involved in the ERDERA work packages, to help them get to know each other. That way, when there are surveys or consultations, we know who the people are across the different ERDERA work packages, and we can connect and share information more easily.
That’s been the key impact so far — making things more structured, better coordinated, and clarifying who does what, and how to get things done more effectively.
I read that Ireland is drafting a new strategy that should run until 2030. Is the National Mirror Group helping shape that strategy?
Yes, absolutely. Many members of the National Mirror Group are very involved in the Strategy itself. A lot of the key stakeholders are either on the National Rare Disease Steering Group responsible for drafting the new Strategy, on behalf of the Department of Health, or will be part of the potential implementation group.
The government has already announced that the Strategy is being finalised and will hopefully be published later this year. Once it’s released, any potential implementation group should include key stakeholders from the NMG.
It will be also be standing agenda item in every National Mirror Group meeting, to provide updates on the Strategy — its progress, developments, and how things are evolving.
For example, the National Rare Disease Office will present clinical updates, the Health Research Board on research activities including ERDERA with work package representatives also sharing their updates as well. That ensures the strategy remains a live document and isn’t forgotten once published.
It also provides an opportunity to raise national or international challenges, or constraints in participating in European initiatives, so we can address them together.
It’s about coordination and collaboration — ensuring nothing is lost, challenges are recognised, and opportunities are seized so that we can improve outcomes for rare disease patients.
Being here and seeing older National Mirror Groups like Portugal’s, or countries just now forming theirs — could someone take inspiration from Ireland?
I think so. We’re now moving into our second national strategy and this meeting has been useful for me to compare our progress with other countries.
For example, France is on its fourth or fifth iteration, so it’s good to see how they’ve redeveloped over time.
Then there are countries like Latvia, who are now forming their Mirror Groups and realising how important that is for their national strategy.
There’s a lot of value in connecting with other countries — learning what has worked, what hasn’t, and applying those lessons.
Like with the UK Mirror Group — connecting with them helped us avoid starting off with a massive group of 150 participants, which would have been too unwieldy. We didn’t want a tick-box exercise. We wanted to engage the right stakeholders — people leading umbrella groups — to keep things coordinated and make a real impact for people living with rare diseases.
It is clear from this meeting; we are stronger working together and sharing collectively and we’re always happy to engage.
