News
MDUK Virtual Information Seminar: Becker Muscular Dystrophy
MDUK are hosting a 2024 virtual information seminar on Becker Muscular Dystrophy which will take place on Friday 18th October 2024 from 10am to 12pm.
The BMD Hub will be represented by Abby Scott (BMD Hub Project Manager) and Prof. Michela Guglieri (Study Principal Investigator/Clinical Strand Lead). Join us for an informative and supportive webinar focusing on Becker Muscular Dystrophy (BMD). The session will explore the latest research on BMD, along with information and guidance on living well with the condition.
Guest Speakers:
Professor Hermien Kan – Associate Professor and Vice Director of the C.J. Gorter MRI Center.
David Hick – Singer, songwriter and musician, who lives with Becker Muscular Dystrophy. David will be providing a first hand perspective of living with the condition.
Dr Konstantinos Savvatis – Consultant Cardiologist.
Katie Nevin – Clinical Specialist Physiotherapist in Neuromuscular Disorders.
Sarah D’Urso – Paediatric Neuromuscular Physiotherapist
Keith Robson – Parents perspective
Abby Scott – BMD Hub Project Manager
For more information and to register click here.
BMD Hub Launch
On the 29th of February, in celebration of Rare Disease Day, the BMD Hub was launched.
Modelled after the successful DMD Hub, a collaboration between Duchenne UK and Newcastle University, the BMD Hub’s goal is to enhance clinical trial readiness in BMD (Becker Muscular Dystrophy) by supporting sites, addressing specific industry needs, linking with the patient community, and promoting more equitable access to clinical research for patients with BMD.
Central to this effort is the establishment of the BMD Hub Central Recruitment Database, a centrally coordinated national recruitment contact database, collecting information from and about people with BMD and their preferences for potential participation in research studies in the UK.
Additionally, through the creation of a network, the BMD Hub aims to bridge educational gaps among healthcare professionals, patients, and families. The BMD Hub website will serve as a valuable resource in achieving this objective.
The BMD Hub was introduced through a webinar for healthcare professional and pharmaceutical industry communities.
The webinar for patients, carers, and families has been postponed and will soon be rescheduled. The date of the event will be communicated soon, please register here and we’ll be in touch with you shortly.
This is a project coordinated by the John Walton Muscular Dystrophy Research Centre at Newcastle University, funded by Edgewise Therapeutics, and collaborating with UK patient organisations with an interest in dystrophinopathies.
