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Welcome and introduction
Thank you from David Ramsden, CEO of Cystic Fibrosis Trust
New Parent Pack
Work Forwards
CF STORM
Bronchoscopy and views beyond the clinic
Involvement support for novel Pseudomonas aeruginosa detection
YAG and the Involvement Group
Q: Was there a specific lightbulb moment, when you could see the difference Involvement made to the work that you’ve done?
Q: How do people find out about the different involvement opportunities?
Ways to get involved
Infection Research Initiative Update with Dara Riva, M.S., Director of Clinical Research Awards
Research Highlight: Nontuberculous mycobacteria (NTM) with Stacey Martiniano, MD, Children's Hospital of Colorado
Research Highlight: Bacteriophage Therapy in CF with Jon Koff, MD, Yale University
Research Highlight: Aspergillus in cystic fibrosis with Gina Hong, MD, University of Pennsylvania Perelman School of Medicine
Welcome Remarks
Data Mistrust and Data Transparency
How does this affect treatment access in the real world?
Voluntary Licensing
Literature Review: CF Cost of Illness Studies
Cost of Illness Studies in Canada
What are some examples of safe net programs?
Why is it important for clinicians to share their stories?
Case Study: Delay in Insurance Authorization
Did you have success with the mobile eye exam clinic?
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