Resources and Information
Financial-Related Resources:
Patient Advocate Foundation: patientadvocate.org
Case management, co-pay relief, and help appealing insurance denials.
HealthWell Foundation: healthwellfoundation.org
Insurance cost-sharing and co-pay assistance for people with serious or chronic illness.
Cystic Fibrosis Foundation Compass: cff.org/compass
Free one-on-one support to help people with CF navigate insurance, care, and daily life decisions.
Communicating With Confidence and Coordinating Your Care: youtube.com/watch?v=EoRQnghMg5Y
A recorded webinar sharing practical self-advocacy skills for healthcare visits, including setting an agenda, sharing your perspective, and navigating provider relationships.
American College of Physicians: Cost of Care Conversation Resources: acponline.org/clinical-information/high-value-care/resources-for-clinicians/cost-of-care-conversations
Practical tools and guides to help clinicians talk with patients about the financial impact of their care.
American Academy of Communication in Healthcare (AACH): aachonline.org
Training in relationship-centered care and patient communication.
Research-Related Resources:
NIH: Clinical Research Trials and You: The Basics: nih.gov/health-information/nih-clinical-research-trials-you/basics
A plain-language guide from the National Institutes of Health explaining what clinical trials are, how they work, and what to consider before deciding to participate.
Cystic Fibrosis Foundation: Research and Clinical Trials: cff.org/research-and-clinical-trials
Information on research programs, a drug development pipeline tracker, and a clinical trial finder for people with CF looking for studies at accredited care centers.
Participating in Clinical Research: What You Need to Know: youtube.com/watch?v=VZPXFr8wcUg
A recorded webinar covering how clinical trials work, safety protocols, how to find CF-relevant studies, and firsthand accounts from community members about the emotional experience, risks, and benefits of participation.
American Academy of Communication in Healthcare (AACH): aachonline.org
Training in relationship-centered care and patient communication.