If you are a healthcare professional involved in the diagnosis of patients living with Duchenne muscular dystrophy (DMD), we invite you to express your interest in attending a virtual masterclass. The masterclass will be delivered by leading global experts in the field and grounded in lived experience and first-hand perspectives shared by parents of children with DMD. This will also open a discussion for engaging conversations around this topic to knowledge share and discuss challenges.
About PPMD
PPMD is the largest nonprofit organization in the United States focused entirely on DMD. We take a comprehensive approach in the fight against Duchenne – funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options.
Visit their site: https://www.parentprojectmd.org/
About the DMD Early Diagnosis Masterclass
In 2023, TREAT-NMD and PPMD each held workshops to gain perspective regarding the needs and priorities for recommendations related to early diagnosis of DMD. Now, Dr. Michelle Lorentzos and Dr. Bo Hoon Lee lead efforts to establish consensus for care frameworks that can be applied to newborn screening programs across the globe. In this masterclass, you will gain knowledge drawn from their work and explore the resources developed through these projects.
Proposed topics for this Masterclass include:
- Language and communication during diagnosis phase
- Cognitive development during early years
- Psychosocial support for families
- Pharmaceutical and non-pharmaceutical interventions
- Resources for newly diagnosed families
- Parent perspectives
- Case studies
To be the first for updates for when registration opens, please complete the expression of interest form linked below:
https://forms.monday.com/forms/093ab0d141d212d6fda73391b8cb2b1d?r=use1
