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Advocacy Day 2019 participants in front of the U.S. Capitol.


IDF maintains a robust advocacy program focused on national, state, and local healthcare and public health policy issues relevant to the primary immunodeficiency (PI) community. 

Policy priorities

Advocacy is crucial to IDF’s mission to improve the diagnosis, treatment, and quality of life of people affected by PI. IDF's policy priorities fall into four major categories: 

  • Ensuring access to care. 
  • Providing a voice for those with primary immunodeficiency.
  • Expanding screening and diagnosis.
  • Supporting emerging research and therapies.

Take action

When we need elected officials and other policymakers to hear the PI community’s perspective, we send an Action Alert to the community. Customize each alert with your information and hit send. It’s that easy. 

Ensuring access to care

IDF advocates for policies that allow patients ready access to safe and quality care, in the site of care that is most appropriate, with the treatment recommended by their healthcare providers, and with minimization of cost to the patient.

Faces of IDF

Submit your story and picture to create a personal advocacy one-pager you can share with policymakers. 

Expanding screening and diagnosis

IDF advocates for policies that ensure universal newborn screening for SCID is maintained nationwide and support emerging opportunities to screen for other types of PI.

SCID rally at the 2015 IDF National Conference.

Supporting emerging research and therapies

IDF advocates for increased research funding and the removal of barriers to the development and availability of new and emerging therapies to treat PI.

Researcher in his lab.