Communication Tips for Parents
A guide from CureDuchenne on communication tips parents can use while navigating a rare diagnosis.
Navigating School
From CureDuchenne: adapting education, energy conservation in school, routines, accommodations, and more.
Individual Education Plan Examples
Blinded examples from the Duchenne community on how an Individual Education Plan could look for you or your child.
Mejo – Care for Families
Mejo works with the user to help identify and prioritize unique information to develop documents pertaining to your situation, in order to create peace-of-mind and feel more empowered to advocate for the care they deserve.
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.
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.