Since its inception, the Parent Advisory Council has both spearheaded and provided input to many projects impacting CF patients and their families.
· Support Material for patients, families and caregivers:
o CF Passports
o Feeding Tube Awareness Foundation: Introduction to Tube Feeding
o Supporting Loved Ones: A Guide for Family and Friends;
o What To Expect During Your Admission to LPCH.
o Transition Guide for Teens
o Partners in Health Infection Control Brochure
o The Binder Project
· Educational Programs for Parents:
o CF College 101 Workshop
o Class for Newly Diagnosed Families
· Provided Parent Perspective during CFF Site Visit
· Assess and update resource/support materials for families
· Assist care team in promoting cross infection protection policies both
hospital and clinic wide
· Address unmet needs of the Center’s Spanish-Speaking patients and families
· Collaborate with the Adult Council and Clinic to improve Pediatric to
· Address support services and unmet needs of “Other” types of transition
o Newly Diagnosed families
o Newborn to Pediatric Transition
o Starting School (Kindergarten, High School and College)
· Seek solutions for improved care and communication between service lines
o Collaboration with the Diabetes Advisory Council to advocate for our CFRD patients
· Annual Participation in the Stanford CF Education Day
· Participation and Updates in CF Newsletter
· Encourage traffic to the CF Center Facebook page-meetings and
agendas are posted monthly.
· Advocate for a Parent Mentoring Program
· Participate in FCC-driven meetings (example: Hospital Wide Council) for
input on policies/programs that have direct impact on CF patients and
· Share strategies to increase participation in clinical trials
The Power of Participation
We need to hear from parents! Do you have an idea, feedback/concerns, or a project you’d like us to work on?
The CF Care Team and Parent Council Members want to hear from other families. We can host guests during our meetings (either in person or via telephone), we can present ideas and/or feedback received from parents and we can provide resources and support to CF families.
Questions? Email Kirsten: firstname.lastname@example.org