PTC has introduced a physiotherapy education program, consisting of a series of activities specifically designed to support improved Duchenne care, both in professional physiotherapy practice and also at home. Duchenne muscular dystrophy (Duchenne or DMD) is an inherited disorder which, although rare, is the most common form of muscular dystrophy. Duchenne can have a huge impact on the quality of life of patients and their families.
There is no cure for Duchenne, but interventional therapies and management strategies may help relieve its symptoms. Physiotherapy is one such intervention that can be of enormous benefit for children and adults with Duchenne, by helping them maintain mobility and reduce pain.
Physiotherapy for Duchenne is highly specialized and it’s important to perform the exercises and stretches correctly for long-term benefit. A shortage of physiotherapists, lack of experience and knowledge in managing Duchenne patients makes access to physiotherapists very challenging for patients and caregivers living in certain countries.
PTC wanted to help address these gaps by partnering with a group of physiotherapists with expertise in neuromuscular disorders to develop hands-on training workshops and resources for physiotherapists, patients and families. Upskilling physiotherapists proved incredibly effective with 161 physiotherapists from 30 countries having received the hands-on training. Plus, more than 50 patients and families have accessed the training in order to continue the therapeutic journey with at-home exercise and conditioning.PTC developed a series of physiotherapy exercise and stretching books in partnership with a neuromuscular physiotherapist in the UK. Our interactve comic-style physiotherapy books for different age ranges include comic books for younger children with Duchenne (up to approx. 8 years), comic books for older children (8 years and over), and a stretching guide for adults. Combined, these reached about 750 families with Duchenne in multiple countries including: the UK, Ireland, Russia, Croatia, Romania and Italy. Due to popular demand, these books have been translated into multiple languages. The English versions are available for download online from the Duchenne and You European website.
Our Improving Duchenne Care with Physiotherapy was a finalist for the Reuters Events Pharma Europe 2020 award. Congratulations to our award winner, Well Child for Life, and our other finalists in Europe:
• Rare Resolve for Rare Disease – Advancing Diagnosis of AADC Deficiency
• RCPCH – e-Learning for Early NMD Diagnosis in the United Kingdom
• STRIDE Registry – First and Largest Real World Study of Nonsense Mutation DMD
Our project to accelerate DMD diagnosis in Russia was a finalist for a Reuters Events Pharma Awards USA Global Health Pioneer award in 2020.