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.
Board members:
- Are parents of children and adolescents with cystic fibrosis who are treated at CHOP
- Live in the tri-state area
- Provide emotional 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 is a recognized volunteer project at The Children's Hospital of Philadelphia and members of the council are formally accredited as hospital volunteers. This means that board members adhere to the standards of conduct that apply to hospital volunteers, including the obligation to maintain the confidentiality of patient information.
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
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
- Suggesting ways to reduce the frequency of hospital admissions and shorten hospital stays
- Supporting the communication network between adolescents and college-age patients via e-mail and phone
- Raising awareness of organ donation
- Helping the Cystic Fibrosis Center transition adolescents to adult care centers
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