Cystic Fibrosis Patient and Family Advisory and Advocacy Committee
We are all ages and come from all over the states of New Hampshire and Vermont, but are united by our commitment to consistently improve care. We are dedicated to working with and getting to know the cystic fibrosis care team and each other in an atmosphere of trust and compassion, to improve care and the quality of life for those with cystic fibrosis. We rotate our meetings among Lebanon, Concord and Manchester to help make the travel less of a burden.
Although CFPFAAC is a mouthful of an acronym, everything else about the Council is user-friendly and welcoming to those who share our values, vision and mission.
We are a recognized volunteer project at DHMC in Lebanon, NH, and members of our council are formally accredited as hospital volunteers. This means we adhere to the standards of conduct that apply to hospital volunteers, including the obligation to maintain the confidentiality of patient information.
Some of our recent efforts
- Collaborating with inpatient staff on infection control protocol
- Advocating for inclusion of cystic fibrosis in NH newborn screening program
- Collaborating with Cystic Fibrosis Team on standard doctors' orders for inpatient admissions
- Assisting with development of Cystic Fibrosis Center web site, including presentation of outcomes data
- Attending annual Cystic Fibrosis Center retreat and providing feedback in emerging issues
- Networking with patient/family groups at other cystic fibrosis centers and encouraging their development
- Working with Cystic Fibrosis Center staff on development of annual Family Night
- Helping to create a patient/family presence at the annual North American Cystic Fibrosis Conference
- Building a bigger, stronger and ever-friendlier network of cystic fibrosis patients and families
We are looking forward to starting new initiatives
- Improving pharmacy services for cystic fibrosis patients
- Helping families with newly diagnosed cystic fibrosis patients adjust and cope
- Improving genetic counseling and family planning services for cystic fibrosis families
- Dreaming up ways to make inpatient stays more fun for cystic fibrosis kids and less disruptive for families
- Developing an annual conference of New England cystic fibrosis patient/family advisory groups
- Improving our outreach to patients and families in rural areas and those unable to attend meetings
- The empowerment of individuals with cystic fibrosis and their families
- An environment of open communication: input and feedback by patients and families into the process of care
- Trust and respect: a non-judgmental posture towards patients and families
- Collaborative care with practical customization to the individual patient
- Challenging the cystic fibrosis medical community to innovate in research and application
- Continual improvement of the quality of care
- Supporting ongoing research with consistent application of best practices
- Confronting cystic fibrosis with love, compassion and solidarity
Our vision is to enhance both the medical care of cystic fibrosis patients and their quality of life, empowering both patients and family members to be full participants in the care process, seeking to draw together and support all involved in a unified effort to overcome cystic fibrosis.
We exist to enhance the medical care and quality of life for those with cystic fibrosis. Through collaborative efforts with the medical community, we seek to promote an open learning environment that results in personal empowerment and individualized care driven by proven best practices. In all we do, we seek to support cystic fibrosis patients and families with compassion, standing together in love as one in our common struggle against cystic fibrosis.