Ciliopathy Alliance Holds 15th Annual General Meeting and Confirms New Leadership

rare disease, agm, patient groups, sightloss, ciliopathy, renal, respiratory

The Ciliopathy Alliance held its 15th Annual General Meeting on 2 October 2026, bringing together trustees, clinicians, researchers, and community representatives for an important strategic and scientific update.

Professor John Sayer delivered a research presentation on renal ciliopathies, highlighting advances in genetic diagnostics, urine‑derived cell models, and emerging therapeutic approaches including chaperone drugs, gene manipulation, nonsense read‑through therapies, and exon skipping. He noted that while gene therapy delivery to the eye is progressing well, kidney‑specific delivery remains a key challenge.

“Use of urine‑derived cells to replicate kidney disease in dishes allows for ‘transcriptomic signatures’ to identify druggable pathways.”

The Alliance also reviewed progress under its 2025–2028 strategic plan, including digital transformation, strengthened research partnerships (TherRacils, Ciliaren, Cilia AI), and expanded operational capacity through a paid administrator and university interns.

Financially, the organisation reported a reduced deficit of £4,450 and year‑end reserves of £21,992. A major milestone for 2026/27 has been a £30,000 donation from Woburn Golf Club Captain Nick Wilson, securing long‑term sustainability and administrative support.

Key governance changes were confirmed:

Fiona Copeland appointed Chair
Jack Pryor appointed Treasurer (three‑month trial)
Reappointment of existing trustees
Elizabeth Forsythe stepped down for a one‑year sabbatical

Actions included preparing for patient advocate attendance at Cilia 2027, strengthening social media planning, and promoting charity running events.

The AGM closed with thanks to all attendees and contributors.