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

The National Lottery Community Fund

The National Lottery Community Fund distributes over £600m per year to communities across the UK, raised by players of The National Lottery.

We have been awarded the incredible sum of £174,290 over 5 years, which will allow us to employ a Research Analyst and Counsellor to expand our support for the leukodystrophy community.

Garfield Weston Foundation

The Garfield Weston Foundation is a family-founded, charitable grant-making foundation, which supports a wide range of causes across the UK, donating over £80 million annually.

Almost 2000 charities across the UK benefit each year from grants made by the Foundation, ranging from small community and volunteer projects to large national organisations. Despite this range, the common theme is that charities demonstrate they are meeting a need effectively with clear outcomes and benefits, good leadership, sensible business plans and a commitment to excellence.

Thanks to the Garfield Weston Foundation we have been awarded a grant to expand our beneficiary support and engagement activities for Alex TLC.

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.

Vigil Neuro

Vigil Neuro are a microglia-focused company dedicated to improving the lives of patients, caregivers, and families affected by rare and common neurodegenerative diseases. They provide funding for our support and awareness raising work.

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.

Disabled Children’s Partnership (DCP)

We are a proud member of the Disabled Children’s Partnership (DCP) – a growing coalition of more than 90 organisations – campaigning for improved health and social care for disabled children, young people and their families in England.


Neurological Alliance

We are a member of the Neurological Alliance. The Neurological Alliance are England’s leading coalition of organisations and professional bodies supporting people with neurological conditions. They are an alliance of over 80 organisations working together to transform quality of life for people with neurological conditions by improving treatment, care and support.



Society for Endocrinology

We are proud to be affiliated with Society for Endocrinology, an organisation that supports clinicians, scientists and nurses who work with hormones throughout their careers. They engage policy-makers, journalists, patients and the public with hormone science to encourage informed health decisions, and to demonstrate the value of endocrinology
to the wider world and also maintains a public information website, You and Your Hormones.


Sponsors of our 2021 Community Weekend


Affinia Therapeutics:

Affinia Therapeutics: are focused on using innovations in gene therapy to lead the fight against devastating rare and prevalent diseases

Autobahn Therapeutics

Their mission is to improve life health for people affected by CNS disorders by driving the regenerative power of the human body.

Leadiant Biosciences 

Leadiant Biosciences is a research-based pharmaceutical company that dedicates considerable scientific and financial resources to the research, development, and distribution of novel and effective therapies for patients affected by rare disease


Orchard was founded in 2015 — but our roots run deeper, going back to some of the first research and clinical development involving ex vivo autologous gene therapy.

Passage Bio

Passage Bio has a focused mission to provide life-transforming therapies for patients with CNS disorders that replace their suffering with boundless possibility


Poxel is a clinical stage biopharmaceutical company developing innovative treatments for chronic serious diseases with metabolic pathophysiology, including non-alcoholic steatohepatitis (NASH) and rare disorders.


SwanBio Therapeutics goal is to prevent the progression of debilitating disease and enable the progression of the person