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

NHS England

Alex TLC have been working alongside Metabolic Support UK and the NHS England Inherited White Matter Disorders Diagnostic and Management Service (All Ages) since 2019. This highly effective and mutually beneficial partnership clearly demonstrates that patient voice has been, and continues to be, a priority for delivering patient services.

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.

Partners in Health

The Partners for Health collaborative grants programme encourages partnership working between health agencies, public and charitable, and community groups and is co-funded by London Catalyst and the Hospital Saturday Fund. Their grant will supplement our Lottery funding to employ a Research Analyst.

Ionis Pharmaceuticals

Ionis is guided by world-class scientists and business leaders whose passion to innovate is matched only by their commitment to deliver transformational medicines to patients who need them. Their support will supplement our Lottery funding to employ a Counsellor.

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.

LEUKOLABS

 

LEUKOLABS is a UK founded network to promote collaboration in leukodystrophy research by bringing together researchers and clinicians to promote translational leukodystrophy research with patient-focused outcomes.

 

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.