The Childhood Dementia Initiative aim is to accelerate the development of treatments and improve accessibility and quality of care for children with dementia. The organisation leads a paradigm shift by driving solutions for all of the conditions that cause childhood dementia as a collective. This approach compels awareness and allows for greater efficiencies, scale and impact.
We are a Patient Group Partner for the Childhood Dementia Initiative and are committed to supporting the project’s vision and 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 proud to be a part of the European Reference Network for Rare Neurological Diseases, which champions equitable care and treatment across Europe through its extensive professional networks. Sara Hunt, CEO, is the Patient Advocate Representative for Leukodystrophies.
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 Rare Diseases Framework in England and work towards implementation within the NHS.
They are an important ally in our work and our CEO, Sara, is also a Trustee on their Board.
Ionis Pharmaceuticals unites groundbreaking science and technology with relentless passion to discover and deliver medicines that enable better futures for people living with serious diseases. Ionis Pharmaceuticals have contributed to the funding of our Research Analyst role.
The Jeans for Genes campaign is an annual fundraising initiative that encourages individuals to wear jeans to work or school in exchange for donations. The funds raised are distributed as grants to charities that support those with genetic conditions.
We have been awarded £5,000 towards our core costs, which underpin all our direct frontline services, peer networking activities, information provisions, and awareness raising activities.
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.
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.
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.
Neuraxpharm is a European leader in pharmaceuticals for disorders affecting the central nervous system (CNS). Neuraxpharm has provided financial support (by way of a grant) for the delivery of our peer support activities and our counselling service but had no input in any aspect of the logistics of our activities.
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.
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.
As the world’s leading darts manufacturer, Target delivers premium, innovative equipment designed to enhance performance for players at all levels.
Our partnership holds a deeply personal meaning for Target and has been launched to honour the daughter of one of their key members of staff.
