Become an effective advocate for the PI community! By reviewing IDF’s new Patient Advocacy Engagement Toolkit, you can learn how to advocate to legislatures and government agencies across the country. Find your role in IDF’s advocacy efforts by visiting the toolkit.
Federal advocacy priorities for the Immune Deficiency Foundation (IDF) fall into four major categories:
- Access to care
- Screening and diagnosis
- Primary immunodeficiency disease (PI) community support
- Research and development
State advocacy priorities for the Immune Deficiency Foundation (IDF) fall into three major categories:
- Access to care
- Screening and diagnosis
- Protections for the immunocompromised community
The Immunocompromised Collaborative is the united voice of communities whose health status makes them most vulnerable to threats from infectious disease. The Collaborative seeks to inform federal and state policies to prevent the spread of infection and ensure that the needs of the immunocompromised are met.
IDF assists individuals, families and clinicians in navigating through the maze of private insurance access issues unique to PI. These issues include ensuring appropriate immunoglobulin (Ig) guidelines, standards of care, sites of care and access to specialists. Educating insurance payers about the need for open access to treatments to address the needs of the PI community will result in better care.
Make change happen by reaching out to government officials. Volunteers will work with IDF staff to advocate in their areas. If you like the idea of scheduling meetings with legislators and/or community leaders to educate them about state and federal legislative issues related to PI, then this is the volunteer role for you!
Reaching out to your public officials is simple and quick with the IDF Action Alert system. Customize each alert with your name and contact information and hit send. It is that easy.
IDF Advocacy Playlist
Now is the time to make sure the unified voice of the IDF community is heard! IDF Advocacy videos communicate the powerful message of our patients and their stories to impact policy decisions. Focusing on patient advocacy on behalf of breaking public policy issues, this playlist activates our patient volunteers and family members by sharing their personal stories.
