Key Partners

We’re so grateful for the support of our key partners, we couldn’t help so many people without them. If you could partner with us, please get in contact today.

Alex - The Leukodystrophy Charity

bluebird bio

bluebird bio™ are a pharmaceutical company developing gene therapy for patients unable to have a traditional bone marrow transplant. This exciting breakthrough means boys who cannot be matched for a suitable donor now have access to this life saving treatment.They provide annual funding for our support and awareness raising work and have been instrumental in our assays to introduce new born screening for adrenoleukodystrophy (ALD) to the UK. We are very grateful to them for funding this website.

Minoryx Therapeutics

Minoryx is a clinical stage biotech company leading the development of new therapies for X-ALD. They regularly provide funding for our support and awareness raising work.


DG3 is a leading global provider of print and communications services. They generously provide free print and design services and have been a key supporter since the charity was founded.

Genetic Alliance UK

The Genetic Alliance is an umbrella organisation for genetic and rare diseases. A key focus is political campaigning for sufferers of genetic and rare disease, and they are responsible for the development of the UK Strategy for Rare Diseases in England and work towards implementation within the NHS.
They are an important ally in our work CEO, Sara, is also a Trustee on their Board.

Metabolic Support UK

Metabolic Support UK is an umbrella group for patients with metabolic disorders and their families. They provide family and community services, advocacy and awareness, information and support for research.