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

Global’s Make Some Noise

Global’s Make Some Noise is a national charity that supports small charities that look after some of the most vulnerable in our communities. Supported by Global, the  media and entertainment group is passionate about giving back to the communities to which it belongs. Global does so by supporting Make Some Noise as part of their Corporate Social Responsibility plan.

The National Lottery Community Fund

The National Lottery Community Fund have been a regular supporter of our work since 2006. During 2020 they generously supported our core costs and our first ever Digital Community Weekend event.

Pears Foundation Grant

As part of Government’s £750m charities package we welcome the support of  the Pears Foundation.

The Funding is granted through Pears Foundation’s trusted, long-term Partners to ensure funding gets to frontline organisations and their communities.


@PearsFoundation and @DCMS

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.


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.

Sponsors of our 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