Alongside co-leading the LifeArc Centre for Acceleration of Rare Disease Trials, we are pleased to share that Northern Ireland are also embedded in the LifeArc–Kidney Research UK Centre for Rare Kidney Disease, supported locally by our Northern Ireland Kidney Research Fund.

Led locally by Dr Emma O’Hagan, Dr Tamara Mallett, and Prof AJ McKnight, Northern Ireland is participating in the LifeArc–Kidney Research UK Centre for Rare Kidney Disease, contributing to efforts that aim to improve access to clinical trials and innovative treatments for children affected by rare kidney conditions. This work is particularly important, as the majority of children with kidney failure are living with a rare kidney disorder & most clinical trials exclude children. More than a quarter of adults with kidney failure live with a rare kidney disease and rare kidney conditions often lead to kidney failure earlier than more common causes of kidney disease.

There is no cure or approved treatment for >95% of rare diseases & not much is known about many types of rare kidney diseases. While rare diseases are individually uncommon, their collective impact is significant on individuals affected and wider health services.

Thanks to the generosity of supporters and fundraisers, the Northern Ireland Kidney Research Fund (NIKRF) is proud to be helping fund this vital research locally in Belfast. The project is focused specifically on rare paediatric kidney diseases, helping to understand more about rare kidney conditions, build local research infrastructure for children’s kidney disease, strengthen diagnostic pathways, and enable access to clinical trials for children and families who need them most.

“We are incredibly proud to be investing in this groundbreaking paediatric kidney research in Belfast. By supporting innovation in early detection, diagnosis and access to clinical trials, we are helping to build a stronger future for children living with rare kidney diseases and their families. This work represents real progress and real hope.” Susan Kee (NIKRF Research Operations Manager).

Several PhD students are also working on this project supported by NIKRF. Their research is driving innovative ways to improve early detection, diagnosis, and treatment of rare diseases, including the creation of a national kidney‑disease registry. They are also working closely with families to understand the hidden costs of living with rare kidney conditions, while developing a creative arts programme to raise awareness and deepen understanding of these disorders in children and young people.

This research represents a crucial investment in the health and future of our children with collaboration at it's core.

The LifeArc research programme in Northern Ireland is led by Professor AJ McKnight, who highlights the importance of partnership working:

“Collaboration is at the heart of everything we do. We are stronger when we work together. This year, we have partnered with incredible charities — including the Northern Ireland Kidney Research Fund, the Fragile X Society, and the Northern Ireland Rare Disease Partnership, to establish new PhD studentships that are building local capacity and skills in rare disease research.

These students will help improve how rare diseases are diagnosed and treated. People living with rare conditions, alongside families and the charities that support them, are involved at every step; a testament to the power of connection in driving real change for families.” Prof. AJ McKnight.

This collaborative approach reflects the shared commitment across Northern Ireland’s rare disease community to ensure that research is patient-centred, inclusive, and impactful, delivering real benefits for children, families, and clinicians now and into the future.