Man, 21, diagnosed with life changing disorder after his mum noticed he kept leaving his dinner in the oven – My London April 1, 2023
Man, 21, diagnosed with life changing disorder after his mum noticed he kept leaving his dinner in the oven – My London April 1, 2023
NHS to offer licensed cannabis-based medicine to treat rare genetic condition – NHS England February 2, 2023
Renfrew man hasn’t had a proper sleep in eight years because of rare genetic disorder – Daily Record September 22, 2022
Children in England with fatal condition to get world’s most expensive drug – The Guardian February 5, 2022
Gene therapy offers new hope for children with metachromatic leukodystrophy – The Lancet January 28, 2022
Community rallies around 6-year-old girl and her family after MLD diagnosis – KABC-TV January 11, 2022
Leukodystrophies in Children: Diagnosis, Care, and Treatment – American Academy of Pediatrics September 26, 2021
Touching tribute from girl, 12, to the little brother she loved so much – Wales Online August 15, 2021
New breakthrough in understanding cause of rare childhood brain disorders: University of Sheffield researchers – Express Healthcare May 6, 2020
Fighting to keep young adults with disabilities out of nursing homes – The Coast Halifax April 26, 2019
For the first time, scientists ‘see’ dual-layered scaffolding of cellular nuclei – Phys.org February 14, 2019
The family handed THREE death sentences: Parents are told their twin boys have the same genetic brain disease that’s slowly killing their daughter – Daily Mail October 2, 2017
One seizure left her crippled – but doctors have no answers for girl, 10, as she battles incredibly rare brain disease that has no cure – Daily Mail September 22, 2017