Petition · Department of Health and Social Care
Fund new-born screening and more treatment for MPS Hurler syndrome
Open for signatures
155 signatures
What the petition asks
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.
Timeline
| 20 Feb 2026 | Petition opened for signatures |
Key facts
Signatures
155
Status
Open for signatures
Department
Department of Health and Social Care
Opened
20 Feb 2026
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Source: the official petition page. Last checked 26 Jul 2026.