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.
Overjoyed About Accessibility
Overjoyed is a new way to create and play digitally turning small mouse movements into key presses and other actions, allowing even people with low to no dexterity or movement to control their computer.
PPMD’s Gene Therapy Hub
Gene therapy has made significant strides in Duchenne muscular dystrophy, with one therapy approved and other potential therapies in various stages of development. PPMD’s resources aim to empower and inform families like yours, providing insights and guidance to help you better understand the dynamic landscape of gene therapy.
Six Core Elements of HealthCare Transition: Integrating Young Adults into Adult Health Care
Got Transition dives deep into how to best transition young adults into adult health care.
Six Core Elements of HealthCare Transition: Transitioning to an Adult Approach to Health Care Without Changing Clinicians
Curious about transition of health care when clinicians aren’t being changed? Got Transition provides a package and explanations for the best approach.
Health Care Transition Quiz for Youth and Young Adults
Are you ready to transition to adult health care? Take this Got Transition quiz for help on what works best for you and your timeline.
Health Care Transition Quiz for Parents and Caregivers
Is your child ready to transition to adult health care? Take this Got Transition quiz for guidance on your family’s transition period.
Books for Individuals and Families Impacted by Duchenne and other Rare Diseases
Books written about Duchenne and rare diseases for parents, individuals, and children.
