Sharing real reviews and pre-loved medical equipment, so that people living with a disability can achieve a brighter future.
Aparito’s mission is to digitise clinical trials and accelerate drug development for patients with life-limiting diseases by supporting patient-centric clinical trials through our Atom5™ platform using novel eCOA to generate continuous real-world data.
DMD Care UK is a national care programme for patients with DMD. The programme is establishing best practice across all the disciplines involved in DMD care, and works to ensure all medical professionals and patients and families know exactly what treatment children and adults with DMD need. It was set up by Duchenne UK, Joining Jack, the Duchenne Research Fund, the John Walton Muscular Dystrophy Research Centre at Newcastle University and the NorthStar network.
The DMD Hub is a network of trial sites with trained staff which are funded to carry out DMD clinical trials and research studies in the UK. It also runs the Central Recruitment Database, a national contact list of children and adults with DMD who are interested in taking part in research studies. The database helps clinical sites to identify potentially eligible candidates for research studies. The DMD Hub is a collaboration between Duchenne UK and the John Walton Muscular Dystrophy Research Centre at Newcastle University.
Project HERCULES (Health Research Collaboration United in Leading Evidence Synthesis) is a collaborative global project set up by Duchenne UK to increase the chances of patients with DMD accessing innovative treatments. It brings together pharmaceutical companies to develop a better evidence base to help support their case for the pricing and reimbursement of new treatments for DMD.
The Maypole Project provides family-centred support, where children and young people between the ages of 0 – 18 years have been diagnosed with a complex medical illness. They provide expert and tailored psychological and social care from diagnosis to treatment and beyond, for as long as we are needed. They aim to relieve and help preserve the mental and physical well-being of children and young people who have complex medical needs and disabilities and to support their family members affected by their suffering and, in certain cases, bereavement.
Pathfinders Neuromuscular Alliance is a user-led charity, run entirely for and by people with muscle-weakening conditions. They provide social and support services, a range of information guides, events and outreach, and campaign on issues that matter to adults living with muscle-weakening conditions.
Flying can be a daunting prospect for disabled people, as it’s a very difficult environment to test and try out before committing to a flight. QEF’s Tryb4uFly service aims to empower disabled people, so they can make informed choices and be more confident about flying.
Duchenne UK is showcasing the latest developments in the SMART Suit project. The aim of this project is to create a wearable assistive device to help restore arm function when it is stolen by DMD. This project is being driven forward in partnership with the University of Liverpool’s Inclusionaries Lab and Spinal Muscular Atrophy UK.
Whizz Kidz support young wheelchair users (up to 25 years old) by providing mobility equipment and through their young people’s services.