Organisations we work with

Action works with other organisations where this helps move forward important medical research for children.

We are working with LifeArc to fund new research from across the UK into children’s rare diseases, including research projects to improve gene therapy to treat Hunter syndrome;  investigate new drug treatments for childhood leukaemia; search for a new drug treatment for Duchenne muscular dystrophy; improve diagnosis and monitoring of hypertrophic cardiomyopathy; and develop a new drug treatment for pyridoxine-dependent epilepsy. We are now working with LifeArc to fund further translational research in 2022 to help children with rare diseases.   

We are working with Borne to fund research to help develop a test to identify women at risk of giving birth early; to help prevent brain injury in premature babies; to reduce the risk of preterm birth; and to reduce the risk of preterm birth following cancer treatment.

We teamed up with the Chartered Society of Physiotherapy Charitable Trust and are jointly funding a project to help young people with cerebral palsy; another about whether it benefits children to stand up and exercise during lessons; and research into improving movement through brain stimulation.

We are funding research into language comprehension in children with cerebral palsy and severe movement problems together with Newcastle Upon Tyne Hospitals NHS Charity and the Great North Children’s Hospital Foundation.

We are working with SMA UK to fund research into a potential new treatment for spinal muscular atrophy.

We are working with the Cystic Fibrosis Trust to fund a study to protect children from life-changing infections and another to develop a new type of gene therapy.

We, the Niemann-Pick Research Foundation and Niemann-Pick UK are funding a study, together with NPSuisse and Niemann-Pick de Fuenlabrada to test a new drug treatment into Niemann-Pick disease type C.

We are working with the British Paediatric Neurology Association (BPNA) to co-fund Research Training Fellowships in the field of childhood neurological conditions, with a Fellowship underway. We are working together to identify a new Fellowship to fund in 2022.

We are also working with the Scottish Government Chief Scientist Office (CSO) to fund project to help prevent or treat serious lung infections and understand more about the genes involved in developmental language disorder to improve diagnosis and treatment.

We teamed up with Great Ormond Street Hospital Children’s Charity and jointly funded 13 project grants from across the UK. We’ve also worked with Neuroblastoma UK to fund a project to help children's immune systems to fight cancer.

We previously funded a four year project developing a new, computerised way of interpreting MRI scans of babies’ brains together with the Engineering and Physical Sciences Research Council. We worked with the MRC to fund a Clinical Research Training Fellow. We funded the first major UK scientific study into multiple sclerosis (MS) in children together with the MS Society.