Cystic Fibrosis Parent Advisory Board

CHOP's CF Parent Advisory Board is a group of parents who work with Cystic Fibrosis Center staff and Hospital leadership to enhance medical care and quality of life for children with cystic fibrosis and their families.

Board members:

• Are parents of children and adolescents with cystic fibrosis who are treated at CHOP
• Provide support and disease management to children living with cystic fibrosis
• Offer feedback and input to CHOP to support the continued growth and evolution of the program
• Promote an open learning environment and personal empowerment
• Support individualized care driven by proven best practices

Guidelines for Cystic Fibrosis Parent Advisory Board members

The Parent Advisory Board meets at least four times each year and parents are encouraged to serve two years on the board.

Cystic Fibrosis Parent Advisory Board activities

Recent efforts include:

• Raising awareness of the infection control policy (inpatient/outpatient)
• Participating in Continuous Quality Improvement projects designed to enhance clinic experiences
• Laying groundwork for the Parent to Parent network
• Working with Cystic Fibrosis Center staff on ideas for the bi-annual Family Night
• Participating in clinical research as controls for Cystic Fibrosis Center
• Creating an email account for families to access PAB
• Attending the annual North American CF Conference

Future projects

Future planned activities include:

• Further developing Parent to Parent – a parent support network that helps families with newly diagnosed patients to adjust and cope
• Supporting the communication network between adolescents and college-age patients via e-mail and phone
• Evaluate and collaborate with clinicians to revise education/teaching materials for newly diagnosed families.