Charity launches £50,000 fund to aid undiagnosed and severe axial

A clean, well-equipped medical examination room with state-of-the-art equipment and sterile environment. Photo: Ivan Babydov/Pexels

The National Axial Spondyloarthritis Society (NASS) is raising £50,000 to celebrate its 50th anniversary while expanding support for people affected by axial spondyloarthritis (axial SpA). The funds will support a new program launching in 2027, specifically targeting individuals whose symptoms prove difficult to control.

This chronic inflammatory arthritis primarily attacks the spine, affecting roughly 220,000 people in the UK, around 1 in 200, though only 60,000 have been formally diagnosed. Many endure an average wait of 7.5 years before receiving a diagnosis, during which they experience persistent pain without understanding its cause. Current treatment options remain inadequate for severe cases, according to the charity, particularly as standard therapies often fail to provide lasting relief for those with progressive spinal fusion.

David, who once competed as a national junior cycling champion at just 15 years old, suffered back pain for a decade before learning he had axial SpA. After seven years of relief from biologics, his condition has deteriorated as parts of his neck, spine, and ribs fused together, complicating breathing and daily movement. The physical limitations now force him to adapt his lifestyle in ways he never anticipated.

Since its establishment in 1976 through the collaboration of patients, rheumatologists, and physiotherapists in Bath, NASS has driven awareness campaigns, influenced NHS clinical guidelines, and secured adoption of its Axial SpA Playbook by NHS England in 2025. The charity’s advocacy efforts in 2013 brought patient voices to Parliament, directly contributing to the NHS’s first national clinical guidelines for the condition in 2017. Last year alone, the charity’s Helpline assisted 5,053 people through guidance and support, reflecting growing demand for specialized care.

The campaign, branded “end the wait,” invites donations at three levels: £25 helps newly diagnosed individuals, £100 sustains Helpline operations, and £250 provides year-round assistance for someone living with the condition. Contributions can be made through nass.co.uk/donate. The effort aligns with broader goals to reduce diagnostic delays and improve outcomes, especially for those whose conditions progress despite standard therapies.