Become an Alpha-1 Advocate

Are you an international Alpha-1 patient? Learn more about becoming a Global Alpha-1 Advocate here.

The Alpha-1 Foundation provides training, guidance, and resources to empower, educate, and mobilize Alphas. Our community is strong, and when we work together to share stories and experiences, we amplify the urgency of our cause. 

Our advocacy program targets policymakers, regulatory agencies, the public, and the media with campaigns to promote research and raise awareness of the challenges faced by Alphas and care providers. 

Our public policy work is carried out in part by our grassroots community, as well as key stakeholders, staff, and our extensive network of healthcare professionals. 

What is an Alpha-1 Advocate?

Alpha-1 Advocates represent the Alpha–1 Foundation at forums and lobby days each year and work to raise awareness of Alpha-1 and help change public policy to improve the lives of all Alphas.

Advocates urge members of Congress and federal agencies to prioritize the needs of Alphas and those affected by rare and chronic conditions, with a focus on:

  • Eliminating barriers to healthcare coverage
  • Advocating for telehealth and home infusion
  • Ensuring access to essential medications and therapies
  • Raising awareness of patient needs
  • Improving patient detection and outcomes

How can I advocate for Alpha-1?

There are many ways to be an effective, successful Alpha-1 Advocate, including:

  • Raise awareness by posting about Alpha-1 on your social media
  • Reach out to your district representative to let them know how their policies impact you
  • Write to the editor of your local paper about Alpha-1 and COPD

To become an Alpha-1 Advocate, contact Jeanne Kushner, Director of Communications & Public Affairs at jkushner@alpha1.org, or call 1-877-228-7321, ext. 204