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Review evidence and fund addition of Fabry disease to the newborn screening test

Submitted by Megan Micklewright on Thursday 19th June 2025

Published on Wednesday 30th July 2025

Current status: Closed

Closed: Friday 30th January 2026

Signatures: 267

Relevant Departments

Tagged with

Access ~ Change ~ Damaged ~ disease ~ Families ~ fund ~ genetic ~ Hearts ~ Heels ~ Kidney ~ Prick ~ RARE ~ Reviewed ~ Save Lives ~ Sooner ~ testing ~ Threatened

Petition Action

Review evidence and fund addition of Fabry disease to the newborn screening test

Petition Details

Provide funding to add Fabry disease to the newborn screening programme via the existing heel-prick test. Early detection could allow faster treatment and help identify affected families. Review the evidence and begin a process of funding the addition of the disease to the test.

Additional Information

Fabry is a rare genetic disease that can cause life-threatening heart, kidney, and nerve damage. It often goes undiagnosed until it’s too late. Early detection at birth can save lives and allow families to access treatment sooner. Some countries and regions already screen newborns for Fabry and we think that we should too. As someone with Fabry, I know how crucial early diagnosis is. This change could transform care for future generations.


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