NDIAG • Education • Advocacy • Support
NDIAG Advocacy
From newborn screening to National NDI Awareness Day, NDIAG works to make NDI visible and improve the systems families encounter.
NDIAG advocacy
NDIAG advocates for better recognition of NDI/AVPR, stronger emergency preparedness, family education, school inclusion, awareness, and policies that can help children and adults receive earlier recognition and appropriate care.
AVPR2 and newborn screening
NDIAG's founder has been working toward having AVPR2-related NDI considered for newborn screening. The advocacy effort began by learning how the U.S. Recommended Uniform Screening Panel (RUSP) process works, identifying the appropriate federal contacts, preparing a condition nomination, and gathering scientific and stakeholder evidence.
Where the process stands
NDIAG's founder has reported that the AVPR2 condition nomination was received and entered national review. Since then, HRSA has announced a modernized national newborn-screening review framework and an APHL-convened stakeholder workgroup. That means the national process is evolving, and AVPR2 is being pursued through the appropriate federal newborn-screening conversation—not already added to the RUSP.
What the national process considers
- Whether the condition is medically serious.
- Whether a newborn screening test exists and is sufficiently valid.
- Whether a case definition and confirmatory diagnostic pathway are clear.
- Whether early detection can improve outcomes through effective treatment.
- Whether population-based screening data exist.
- Whether state newborn-screening systems can feasibly implement the screening.
The federal process can involve nomination, stakeholder input, evidence review, recommendations, and a final decision regarding the RUSP. HRSA announced in August 2026 that APHL would convene a national newborn-screening stakeholder workgroup and develop findings and recommendations for HRSA's review and consideration.
National NDI Awareness Day
💚💙 April 27
National NDI Awareness Day was founded by NDIAG in 2026 to create a dedicated day for NDI education, awareness, family recognition, and community inclusion.
NDIAG's awareness work includes seeking city and state proclamations, working with communities and schools, creating inclusion campaigns, and encouraging people to share reliable information about NDI/AVPR.
How communities can participate
- Request a local proclamation.
- Share NDI education and family stories.
- Wear NDI awareness colors.
- Educate schools, workplaces, and community organizations.
- Host an accessible family or awareness event.
- Use April 27 to amplify rare-disease voices.
Advocacy resources
HRSA: Condition nomination and review process explains the evidence and stakeholder considerations used in the national RUSP process.