Key Partners

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 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 has allowed us to employ a Research Analyst and Counsellor to expand our support for the leukodystrophy community.

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 supplements our Lottery funding to employ a Research Analyst.

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 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 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.

 

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.

 

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.

 

 

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.