350 million patients globally have rare genetic diseases, including 3.5 million in the UK. 

Leukodystrophies are devastating rare diseases with limited treatment and research on leukodystrophy is under-represented in the UK. A more collaborative and united approach in leukodystrophy research will bring together our national experts and allow rapid and efficient progress towards therapeutic interventions.

Funded by the White Rose University Consortium, we have established LEUKOLABS,  the first UK leukodystrophy network. 

Dr Noémie Hamilton

Dr Noémie Hamilton is a lecturer and group leader at the University of York, with a research focus on neuroimmunology in zebrafish models of neurological diseases. 

Dr James Poulter

Dr James Poulter is a UKRI Future Leaders Fellow and University Academic Fellow in Molecular Neuroscience at the University of Leeds, with an interest in genetic neurodevelopmental disorders.

Dr Sean Sweeney

Dr Sean Sweeney is a lecturer and researcher at the University of York. Sean uses drosophila models and primary neuron cultres to explore the role of endosomal related signaling events in neurodegenerative disease.

O U R   F U N D E R S 

O U R   K E Y   P A R T N E R S

Established in 2004, Alex, The Leukodystrophy Charity is an internationally recognised centre of excellence, delivering high quality support, advice, knowledge and care for everyone affected by leukodystrophy in the UK and worldwide. Led by people with lived experience, the charity undertakes various projects to improve patient outcomes through collaborations with the NHS, leukodystrophy specialists, research organisations, peer groups, and corporates with a common goal.