Policy Updates

Stay Informed, Stay Empowered

In an ever-evolving healthcare landscape, staying informed about policy changes is crucial. We're committed to keeping our community updated on the latest legislative and regulatory developments that affect individuals living with Alpha-1 Antitrypsin deficiency and their families.

What You'll Find Here

This page serves as your central hub for:

• Breaking Policy News: Real-time updates on federal and state policies impacting the Alpha-1 community
• Legislative Advocacy: Information on current bills, regulations, and initiatives affecting rare disease research and patient access to care
• Grassroots Action: Opportunities to make your voice heard on issues that matter to you and your loved ones
• Coalition Efforts: Updates on how The Mark Egly Foundation collaborates with advocates, medical professionals, and organizations nationwide and around the world to drive meaningful policy change

Our Commitment to You

We monitor policy developments closely to ensure our community has the information needed to advocate effectively for better healthcare access, increased research funding, and improved quality of life for all those affected by Alpha-1 Antitrypsin deficiency.

Check back regularly for the latest updates, or subscribe to our newsletter to receive policy alerts directly in your inbox.