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Patient & Family Partner Program: Cystic Fibrosis
Cystic Fibrosis
Patient & Family Advisory Council

The Stanford Adult Cystic Fibrosis (CF) Center has a Patient & Family Advisory Council (PFAC) made up of a diverse group of 6 adults with CF, a mother of an adult with CF, and CF staff. The advisory council includes members with and without access to CF modulators. Each month, we gather virtually to connect with one another, discuss the patient perspective on our clinic, and offer guidance and feedback to our care team. Learn more about our members here.
Some of the work we have done as a group includes:
- Mentoring pediatric transition and newly diagnosed adult CF patients
- Helping the CF team to pilot video visits for advance care planning
- Speaking at CF Education Day
- Providing guidance to CF team about use of home spirometers
- Creating and distributing welcome bags filled with CF-related goodies for patients new to the center
- Provided guidance to SHC CF community around disaster preparedness
- Providing input from the patient perspective on changes to inpatient CF care
- Hosted a contest for pediatric CF patients to name the adult PFAC’s salt shaker logo
Year Established
2009
Patient & Family Chairperson
Angela Nida
Staff Advisor
Kate Yablonsky, LCSW
Members
Will Harvey
Anna P.
David “Shawn” Taylor
Kate P.
Rebekah Davis-Matthews
Abhijit T.
We want to grow!
If you’re interested in sitting in on a meeting or joining the PFAC, click the button below or call (650) 444-6512 to learn more!
Patients or family members from the CF Adult Clinic are welcome to become Advisory Group members. Not only are family members welcome to join, but they are also encouraged.