Good Vibrations? Posted On: 10/03/2024 Reports of experiences with vibration technology by Pompe patient There has been some interest lately about vibration technology in relation to Pompe. Kevin Annesley, PSN board member, has written about his experiences. Read More...
Experiences with Electrical Muscle Stimulation Posted On: 31/01/2024 A Pompe Support Network pilot study of the Mollii Suit The Pompe community has many individuals who have worked with physiotherapists and undergone their own experimentation to discover exercises or other manipulation strategies that may improve muscle function, strength, and endurance. Pompe Support Network organised assessment days of the Mollii Suit Read More...
Aro Biotherapeutics gets FDA orphan drug designation for treatment of Pompe Disease Posted On: 11/08/2022 Aro Biotherapeutics gets FDA orphan drug designation for treatment of Pompe Disease Read More...
Experience the benefits of a Mollii Suit at our Coventry assessment day Posted On: 26/05/2022 Come and view the Mollii Suit in action with our Pompe get-together! Read More...
What the development of Myozyme meant for patients, their families, and their community Posted On: 07/04/2022 The story of the UK Pompe community’s involvement in the development of enzyme replacement therapy for Pompe disease is the subject of an academic publication. Read More...
Pompe quality of life: Future Research Priorities Posted On: 08/07/2021 To help Pompe Support Network understand your research priorities we've created a simple form which we'd appreciate your response. Read More...
Novel Oral Therapy for Pompe disease Posted On: 31/03/2021 A new player, MAZE Therapeutics, has joined the growing number of companies with an interest in Pompe disease. This time they are targeting Muscle Glycogen Synthase, the enzyme that causes a very rare muscle form of Glycogen Storage Type 0. Read More...
Would you like to help research into Pompe disease? Posted On: 16/02/2021 If you have Late Onset Pompe disease and are not already taking part in a clinical trial for Pompe, a research team at a Newcastle study would be interested to take a blood sample from you to help them understand how antibodies in patients may affect a particular gene therapy. Read More...
MHRA deems Sanofi’s avalglucosidase alfa ‘promising’ for Pompe disease Posted On: 01/10/2020 The PharmaTimes online has reported that the MHRA have issued Sanofi a Promising Innovative Medicine designation in the treatment of Pompe disease. Read More...
New Treatment Developments for Pompe Disease Posted On: 30/09/2020 A Letter from Allan Muir, Chair, Pompe Support Network I’ve been wanting to write this article for some time but was slightly daunted by the number of potential treatments currently under study; some paused due to Covid-19, and a few reopening their clinical trial sites. So, it was a wonderful surprise to receive notification of a paper published recent Read More...
