Thank you so much to everyone who has signed and shared this petition. Please continue to share online and in your community.

VA can lead the way in rare disease in so many ways. While the larger fight to add NPD to RUSP nationally goes on, a state can still decide to add screenings outside of RUSP guidance. Your signatures raise awareness and hope. That's what matters.

If you like to learn more about the process you can start here:

https://www.hrsa.gov/advisory-committees/heritable-disorders/rusp

https://www.cdc.gov/nceh/dls/nsmbb_funding.html

Another amazing family's struggle to add a rare disease to the NBS program in their state.