Every year, thousands of newborns in the U.S. are screened for serious conditions whose early detection can change the course of their lives. Right now, we have a chance to ensure Duchenne muscular dystrophy is one of them.
The U.S. Department of Health and Human Services (HHS) is currently reviewing the nomination of Duchenne to be added to the Recommended Uniform Screening Panel (RUSP), the list of conditions recommended for inclusion in all state newborn screening programs.
This is a critical moment for the Duchenne community.
We need families, advocates, clinicians, and allies to come together and submit written comments to the Federal Register, urging HHS to move forward with this lifesaving addition. By sharing your story, you can help ensure that no family has to wait for a Duchenne diagnosis.
To support the community in speaking out, we’ve put together a Written Comment Guide with suggested topics to include and step-by-step instructions on how to submit your comment to the Federal Register.
Every Voice Matters
At PPMD, we’ve spent decades fighting for earlier diagnosis and better outcomes. Adding Duchenne to the RUSP is a crucial step forward—but we need your help to get there.
Your story can help drive change.
Your voice can help make sure no family waits for a diagnosis.
The post Make Your Voice Heard: Support Adding Duchenne to the RUSP appeared first on Parent Project Muscular Dystrophy.