Our Pillars

The Four Pillars of the APOL1 Action Alliance

Everything we do is grounded in four core commitments — to educate, advocate, reach communities, and build partnerships that drive lasting change.

PATIENT EDUCATION

Culturally responsive APOL1 educational materials for patients and families. AAA develops and distributes educational resources specifically designed for communities of African descent, addressing APOL1 basics, genetic risk, disease progression, and treatment options in accessible and culturally resonant formats.

 

PROGRAMS UNDER THIS PILLAR:

  • APOL1 Educational Resource Library (in development): patient-facing guides, fact sheets, videos.
  • Provider Education Initiative: training materials for healthcare providers on identifying and communicating APOL1 risk.
  • Connection to genetic testing through partner programs (Vertex, LabCorp, Arkana Laboratories).
  • Clinical trial navigation and referrals as precision medicine therapies advance.

COMMUNITY OUTREACH

AAA meets communities where they are — in trusted spaces like HBCUs, faith organizations, and community health centers. Our outreach model is explicitly designed to bridge the gap between emerging precision medicine and the communities that need it most.

PROGRAMS UNDER THIS PILLAR:

  • "Know Your Risk" National Awareness Campaign — HBCU and college outreach in DC, MD, VA, NC, and Atlanta
  • APOL1 Empowerment Summit — Flagship educational event (Washington D.C. Metro Area)
  • Patient support group development across high-prevalence communities
  • APOL1 Ambassador Program — training community voices to extend organizational reach

ADVOCACY

AAA amplifies patient voices at every level, from individual healthcare encounters to state legislatures and federal health equity coalitions. We build the infrastructure patients need to share their stories and drive systemic change.

 

PROGRAMS UNDER THIS PILLAR:

  • State-level proclamation and legislative awareness campaigns
  • Participation in federal health equity coalitions and Capitol Hill advocacy days
  • Patient testimony development and storytelling infrastructure
  • Policy briefs and position papers on APOL1 health equity

STRATEGIC PARTNERSHIPS

AAA builds alliances with pharmaceutical companies, academic medical centers, research institutions, and peer advocacy organizations. Our partnership model is collaborative, not competitive, designed to amplify collective impact across the kidney disease ecosystem.

PROGRAMS UNDER THIS PILLAR:

  • Active pharmaceutical partnerships with Vertex Pharmaceuticals, Travere Therapeutics, and Maze Therapeutics, 
  • Clinical trial awareness and community enrollment support
  • Engagement with academic medical centers for testing access and data collaboration
  • Collaboration with peer organizations, including the American Kidney Fund and the Kidney Health Initiative.