Healthcare Transition Timeline for Youth and Young Adults (Spanish)
Cronología para la transición de los servicios médicos para adolescentes y jóvenes adultos .
MDA Transition Guide: Pediatric to Adult Care
A road map for youth with neuromuscular disease and their caregivers.
PPMD’s Transition Toolkit for Duchenne Muscular Dystrophy
Supplemental materials provided by PPMD for transitions of care with Duchenne muscular dystrophy.
Emergency Care Considerations
Contact information, considerations, recommendations, and more about emergency care from Parent Project Muscular Dystrophy.
PJ’s Steroid Protocol
Steroid protocol designed to assist healthcare providers from the Nicholoff Family.
Fat Embolism Syndrome
An overview and important information on Fat Embolism Syndrome provided by Parent Project Muscular Dystrophy.
How Palliative Care Could Address Unmet Needs of Patients With Rare Diseases
Hospice News shares how palliative approaches can help address gaps of care among patients with a diverse range of rare chronic and serious illnesses.
Occupational Therapy from Cure Duchenne
CureDuchenne offers a high level program of educational opportunities and resources for occupational therapists and allied healthcare professionals who treat those with Duchenne muscular dystrophy.
Physical Therapy (for Physical Therapists)
CureDuchenne offers a high level program of educational opportunities and resources for physical therapists and allied healthcare professionals who treat those with Duchenne muscular dystrophy.
Jett Foundation: The Journey to Diagnosis and Next Steps for Female Carriers
A guide sheet from Jett Foundation on how to navigate testing and diagnosis, as well as advice for the steps to follow.
Recording: Packing and Preparing for Camp
A recording of a virtual Jett Foundation and Camp Promise event, featuring a family from the Duchenne community explaining tips & tricks to be best prepared for a camp experience.
Thriving With Duchenne Episode with Two Disabled Dudes Podcast
A Rare Disease Day podcast recording from the Two Disabled Dudes, Kyle Bryant and Sean Baumstark, who moderated Jett Foundation’s 2024 Rare Disease Day event.
Physicians Who Treat Female Carriers of Duchenne
A resource list of known physicians in the United States who treat and care for female carriers of Duchenne muscular dystrophy.
