Mark Egly Foundation

Advocacy Resources

Your voice is powerful and will become even stronger!

Your voice matters—and together, our voices become a powerful force for change. Whether you're living with Alpha-1 Antitrypsin Deficiency, caring for someone who is, or simply passionate about advancing medical research, you can make a difference in the fight for better diagnosis, treatment, and care.

Why Your Advocacy Matters

Policymakers need to hear from real people about real challenges. When you share your story and expertise, you help decision-makers understand:

  • The urgent need for universal screening to detect AATD early
  • The life-changing impact of timely diagnosis and treatment
  • The importance of funding Alpha-1 Antitrypsin research
  • The broader therapeutic potential of AAT for newly discovered associated conditions
  • The barriers patients face in accessing care and treatment

Your advocacy can shape policies that save lives and prevent illness throughout society.

Ways to Advocate

Contact Your Elected Officials

Reach out to your representatives at local, state, and federal levels:

  • Share your story: Personal experiences are powerful and memorable
  • Request meetings: Virtual or in-person meetings make a strong impact
  • Send letters and emails: Written correspondence creates a record of constituent concerns
  • Make phone calls: Quick calls to district offices ensure your voice is heard
  • Attend town halls: Public forums are excellent opportunities to raise awareness

Key Issues to Raise

When contacting policymakers, consider focusing on:

  1. Increased Research Funding
    • Support for NIH and other research agencies studying AATD
    • Funding for novel therapeutic applications of Alpha-1 Antitrypsin
    • Investment in production capacity and accessibility
  2. Universal Newborn Screening
    • Adding AATD to mandatory newborn screening panels
    • Early detection programs that can prevent disease progression
    • Cost-effectiveness of early diagnosis versus late-stage treatment
  3. Access to Treatment
    • Insurance coverage for AAT augmentation therapy
    • Removal of barriers to genetic testing
    • Support for patient assistance programs
    • Telemedicine access for rural and underserved communities
  4. Healthcare Provider Education
    • Training programs to improve AATD recognition and diagnosis
    • Continuing medical education requirements on rare diseases
    • Integration of genetic screening into standard practice
  5. Patient Protections
    • Genetic information privacy and non-discrimination laws
    • Employment protections for individuals with genetic conditions
    • Affordable Care Act provisions for pre-existing conditions

How to Make Your Voice Heard

Prepare Your Message

  • Be clear and concise: Focus on 2-3 key points
  • Use personal stories: Share how AATD has affected your life or family
  • Provide specific requests: Tell policymakers exactly what action you want them to take
  • Cite data when possible: Statistics and research strengthen your argument
  • Be respectful and professional: Build relationships, not barriers

Find Your Representatives

  • Federal: Visit congress.gov or senate.gov to find your senators and representatives
  • State: Check your state legislature website for state representatives and senators
  • Local: Identify city council members, county commissioners, and other local officials

Sample Letter Template

[Your Name]
[Your Address]
[City, State ZIP]
[Date]

[Official's Name]
[Official's Title]
[Address]

Dear [Representative/Senator Name],

I am writing as your constituent and as [a person living with/a family member of someone with/an advocate for] Alpha-1 Antitrypsin Deficiency (AATD). I urge you to support [specific legislation/funding/policy].

[Share your personal connection to AATD - 1-2 paragraphs]

[Explain the specific action you want them to take and why it matters - 1-2 paragraphs]

Early diagnosis through universal screening can give patients like [me/my loved one] the opportunity for normal life expectancy and quality of life. I hope I can count on your support for [specific request].

Thank you for your time and consideration.

Sincerely,
[Your Name]
[Phone Number]
[Email]

Join Advocacy Campaigns

Stay Informed

  • Sign up for advocacy alerts from the Mark Egly Foundation
  • Follow AATD advocacy organizations on social media
  • Subscribe to policy updates from rare disease coalitions
  • Join email lists for legislative action opportunities

Participate in National Initiatives

  • Rare Disease Week: Annual advocacy event in late February
  • Rare Disease Day: International awareness day on the last day of February
  • Constituent meetings: Join or organize visits with legislators
  • Social media campaigns: Amplify messages using campaign hashtags

Partner with Organizations

Connect with established advocacy groups working on AATD and rare disease issues:

  • Alpha-1 Foundation
  • National Organization for Rare Disorders (NORD)
  • Genetic Alliance
  • EveryLife Foundation for Rare Diseases
  • Your state's rare disease advocacy organization

Amplify Your Impact

Use Social Media

  • Share your story with permission
  • Tag elected officials in posts about AATD
  • Use relevant hashtags: #Alpha1, #RareDisease, #AAT, #UniversalScreening
  • Engage with others in the AATD community
  • Celebrate advocacy wins and research breakthroughs

Educate Your Community

  • Speak at community events and health fairs
  • Share information with healthcare providers
  • Organize awareness walks or fundraisers
  • Write letters to the editor of local newspapers
  • Present to civic organizations and schools

Support Research Advocacy

Beyond policy advocacy, support scientific progress:

  • Participate in clinical trials and research studies
  • Encourage family members to get tested
  • Share patient data with registries
  • Advocate for increased research funding
  • Promote open science and data sharing

Tools and Resources

Downloadable Materials

Coming soon: Fact sheets, infographics, and advocacy toolkits to support your efforts

Sample Social Media Posts

Coming soon: Ready-to-share graphics and message templates for your social media platforms

Legislative Tracking

Coming soon: Updates on relevant bills, policies, and regulatory actions affecting the AATD community

Advocacy Training

The Mark Egly Foundation is developing advocacy training programs to help you:

  • Tell your story effectively
  • Navigate the legislative process
  • Build relationships with policymakers
  • Organize grassroots campaigns
  • Mobilize your community

Check back for information about upcoming training sessions and webinars.

Make Your Voice Count

Advocacy is not just about speaking—it's about creating lasting change. Every call, every letter, every meeting moves us closer to a world where:

  • Alpha-1 Antitrypsin Deficiency is detected at birth
  • Every patient has access to life-saving treatment
  • Research funding accelerates breakthrough discoveries
  • The therapeutic potential of AAT benefits millions
  • No family faces a delayed diagnosis and its devastating consequences

Together, we are building a powerful movement for change. Your voice—your advocacy—makes all the difference.

Have questions about advocacy? Want to share your advocacy success story? Contact us to learn more or get involved.