Hope, healing, and answers for every family
An opinion from The Kristen Foundation's editorial desk: for families managing chronic and rare illness, medical debt can be as corrosive as the disease itself. It is time for nonprofits to treat financial toxicity as a health crisis — and to fund the response accordingly.
Across the United States, parents of children with rare diagnoses are no longer waiting for the research pipeline to catch up — they are financing it themselves. This feature traces how grassroots fundraising by families has shortened the road to clinical trials, and where The Kristen Foundation's grantmaking fits within this patient-powered movement.
Specialist appointments are short, expensive, and often overwhelming — which is exactly why preparation matters. Drawing on guidance from physicians and patient advocates, this practical guide outlines the questions that consistently lead to better care, and explains why clinicians genuinely want families to ask them.