Coronavirus (COVID-19)

What you need to do

Read the latest information from Parliament about Coronavirus

Petition Fund adrenoleukodystrophy (ALD) screening for children at birth.

ALD is a rare, devastating terminal genetic condition, affecting 1:20,000. If not diagnosed from birth healthy boys can lose all function and die.

More details

ALD also causes Addison's disease which is easily treated with medication. If you don't know you have Addison's disease or ALD they can both be fatal.

It takes many months, even years to be diagnosed with ALD, then it is too late for treatment and these boys can end up in a vegetative state with death often occurring within two to four years. Boys who are known to have ALD will be put on a program of monitoring and treatment to save their lives. Knowing you have ALD from birth is essential for successful treatment.

Many families experience a sacrificial lamb scenario, having to lose one child to get a diagnosis for their other children.

Sign this petition

6,604 signatures

Show on a map


At 10,000 signatures...

At 10,000 signatures, government will respond to this petition

At 100,000 signatures...

At 100,000 signatures, this petition will be considered for debate in Parliament

Share this petition