Patient Advocacy: Tips for Communicating with Your DoctorI once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider warned that being a "squeaky...2 min read
Understanding Duchenne Muscular DystrophyDuchenne muscular dystrophy (DMD) is a rare genetic disorder that causes muscle weakness and degeneration that gets worse over time. It is...3 min read
Building a Caregiving Team: Finding In-Home HelpLife with a rare disease can require extra at-home help and support. This care varies by person and ranges from skilled hands-on...4 min read
Treatments for Duchenne Muscular DystrophyDuchenne muscular dystrophy (DMD) is a genetic disorder in which the muscles in the body weaken and break down over time. This...3 min read
Building Your Child's DMD Care TeamCaring for a child with Duchenne muscular dystrophy (DMD), a condition that makes muscles weaker over time, will likely involve a team...4 min read
Cost of Living With a Rare DiseaseRare diseases are expensive. Anyone "living rare" likely knows that firsthand. Without a correct diagnosis, you may receive inappropriate care. Or you...3 min read
Practical Tips for Managing Day-to-Day Life With DMDLiving with Duchenne muscular dystrophy (DMD) can bring many challenges each day. As a caregiver, you play a very important role in...2 min read
How to Start Your Own Advocacy GroupAdvocacy groups are dedicated to a specific cause. They are made up of motivated members who come up with plans to make...3 min read
Finding Resilience and Purpose After a Rare Disease DiagnosisMy life changed dramatically in my early twenties when I experienced the onset of a rare disease called narcolepsy. Everything shifted, seemingly...2 min read
More Than Just a Diagnosis: The Daily Impact of Rare DiseaseI wrote about this topic 10 years ago, and while I forgot I had written about it, it's something I've been talking...2 min read
