Open petition: Fund new-born screening and more treatment for MPS Hurler syndrome

Created by Nikki keating
Closes on 20 August 2026

Improve early diagnosis and access to treatment for children with MPS Hurler syndrome, including clearer referral pathways and new-born screening, so children are not diagnosed too late to benefit from treatment.

My son died at two and a half years old from MPS Hurler syndrome, a rare genetic condition. From an early age, we raised repeated concerns with GPs and hospitals but he was diagnosed very late. By the time treatment began, the disease was widespread and he passed away. Early diagnosis is critical for children with MPS. Clear national pathways could prevent other families experiencing the same loss.

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