Parliamentary Launch of Rare Kidney Diseases Report at House of Commons Roundtable
This week, we hosted the parliamentary launch of our new report on rare kidney diseases at a high-profile roundtable event in the House of Commons.
The event was hosted by Stuart Andrew MP, Shadow Secretary of State for Health and Social Care, and brought together key voices from patient and clinical communities, government, and industry.
We were honoured to welcome Health Minister Dr Zubir Ahmed MP, Dame June Raine, George Agathangelou (ZS Associates), Professor Louise Oni, and kidney patients Kathryn and 15-year-old Morven, who shared their powerful experiences.
The roundtable highlighted the urgent need for action to support the estimated 160,000 people in the UK living with a rare kidney disease. Discussions focused on building consensus for:
- Earlier diagnosis
- Improved access to treatments
- Greater access to clinical trials for children
Alison Railton, director of policy and public affairs, said: “It was heartening to see such shared commitment and passion to make a real difference for patients and families affected by rare kidney diseases.
"We will now build on this momentum to make the case to government for meaningful change.”
Collectively common: the devastating impact of rare kidney diseases in the UK
Our independently produced report reveals the impact of rare kidney diseases.
The report shows that people with rare kidney diseases face significant diagnosis delays, inconsistent care and long waits for new treatments, with children in particular left at greater risk of medical, educational, and economic disruption.
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