
Community & trust
Giving patients a voice
Not a resource list. People who went through some version of this, and the groups that walked with them.

"I put off the first call for three weeks because I assumed the answer would be no. It took eleven minutes and the answer was yes."
Ray was uninsured between jobs when he was diagnosed. A counselor screened him for the Patient Foundation on the same call.
Ray, 68 · Living with non-small cell lung cancer
Hear more of Ray's story· 6:42
"Nobody asked how I was doing for about four months. When someone finally did, I didn't have an answer ready."
Dana joined a caregiver group through the advocacy directory and now helps run its weekly call.
Dana, 54 · Caring for her daughter
Hear more of Dana's story· 8:15
"The trial navigator called the study site for me. I would never have known to ask that question myself."
Mira enrolled in a study 40 minutes from home after a navigator reviewed her eligibility.
Mira, 33 · Two years into treatment
Hear more of Mira's story· 7:03
Advocacy groups
Independent organizations. They don't work for us, which is part of the point.
National Patient Advocate Network
Coverage denials, appeals, billing help
Caregiver Circle
Weekly peer calls for family caregivers
Lung Health Alliance
Disease education and local support chapters
Trial Access Project
Independent clinical trial matching support
Rural Care Bridge
Travel, lodging, and distance-to-care support
Young Patients Collective
Community for people diagnosed under 40
Patient Co-Creation Council
Twenty-two patients and caregivers who review this experience four times a year, get paid for their time, and can veto language that doesn't sound like a human wrote it.
Applications open twice a year. No medical or professional background required — the qualification is having lived it.
See what they changed, and request a seatOur promise
Breakthrough science only matters if it reaches people. Our population health work focuses on the gaps: communities under-represented in research, distance to specialty care, and coverage barriers that decide who gets treated and who waits.
Ask the assistant about any of thisConcept prototype. Stories, groups, and program details are illustrative placeholders — not medical, legal, or financial guidance.
