decorative shape
patient advocacy strategies icon
Blog Posts

Tag: Access to Care

it doesn't have to be this way: paving the potholes in advocacy

It Doesn’t Have to Be This Way

Paving the Potholes in Advocacy We’ve all been there. You’re navigating a complex system—whether it’s healthcare, education, or government—and you hit a wall. You find yourself asking: That frustration is...

Published April 6, 2026
MLD and DMD Added to the Federal RUSP - a Victory for Newborn Screening

MLD and DMD Added to the Federal RUSP: A Victory for Newborn Screening

Today brings exciting news for the rare disease community, born from immense effort, patient advocacy, and a refusal to back down. In a historic move, Metachromatic Leukodystrophy (MLD) and Duchenne...

Published December 16, 2025
Lesa, Brennan, and Tori Brackbill

Newborn Screening – Going Beyond Awareness

Newborn Screening Awareness Month is here, but it's time to shift our focus from awareness to action, and to take the time to listen to state Newborn Screening programs so...
Published September 5, 2025
words related to treatment access

Deciding Access to Treatment for Rare Disease

Imagine this: You and your child are in a cold, sterile examination room where motivational posters on the wall preach empty platitudes of encouragement. You’re anxious about getting bad news...

Published March 4, 2025
patient advocacy strategies icon
search...