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CF Patient & Family Advisory & Advocacy Committee

Who we are

We are CF patients and family members of people with CF who get their care at Dartmouth-Hitchcock. 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 CF care team and each other in an atmosphere trust and compassion and with the purpose of improving care and the quality of life for those with CF. We rotate our meetings among Lebanon, Concord and Manchester to try and 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.

The CFPFAAC is a recognized volunteer project at DHMC 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.

Here are some of our recent efforts:

  • Collaborating with inpatient staff on infection control protocol
  • Advocating for inclusion of CF in NH newborn screening program
  • Collaborating with CF Team on standard doctors' orders for inpatient admissions
  • Assisting with development of CF Center website, including presentation of outcomes data
  • Attending annual CF Center retreat and providing feedback in emerging issues
  • Networking with patient/family groups at other CF Centers and encouraging their development
  • Working with CF Center staff on development of annual Family Night
  • Helping to create a patient/family presence at the annual North American CF Conference
  • Building a bigger, stronger and ever-friendlier network of CF patients and families

We are looking forward to starting new initiatives including:

  • Improving pharmacy services for CF patients
  • Helping families with newly diagnosed CF patients adjust and cope
  • Improving genetic counseling and family planning services for CF families
  • Dreaming up ways to make inpatient stays more fun for CF kids and less disruptive for families
  • Developing an annual conference of New England CF Patient/Family advisory groups
  • Improving our outreach to patients and families in rural areas and those unable to attend meetings

Our values

  • The empowerment of individuals with CF 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 CF 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 CF with love, compassion and solidarity

Our vision

Our vision is to enhance both the medical care of CF 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 in the struggle against CF.

Our mission

The Cystic Fibrosis Patient-Family Advisory & Advisory Council exists to enhance the medical care and quality of life for those with CF. 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 CF patients and families with compassion, standing together in love as one in our common struggle against CF.

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