Petition · past parliament · Department of Health and Social Care

Research the ultra rare genetic brain disorder AARS2 Leukodystrophy

Closed 73 signatures

What the petition asks

We propose that UK Government should invest in researching the ultra rare brain disorder AARS2 Leukodystrophy. There are only two confirmed scientific cases in the United Kingdom so we need investment to find treatments and a cure.
AARS2 affects the the brain and nervous system, causing damage to nerve cells in the cerebellum, which is the part of the brain responsible for balance. It is a progressive disease. It starts with mild symptoms like clumsiness and eventually leads to severe disabilities affecting all four limbs, speech, swallowing, and causes seizures.There is no cure or treatment. To date not much is known about the condition. AARS2 unfortunately is fatal and estimated lifespan is 5 - 10 years.

Timeline

13 Dec 2022 Petition opened for signatures
13 Jun 2023 Closed to new signatures

Key facts

Signatures 73
Status Closed
Department Department of Health and Social Care
Opened 13 Dec 2022
Closed 13 Jun 2023

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Source: the official petition page. Last checked 15 Jul 2026.