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Support for PF


When a person is diagnosed with Pulmonary Fibrosis, they will have lots of questions. 

Support can be in the form of:

  • Care Partners

  • Local Support Groups: The Greater Kansas City Pulmonary Fibrosis Support Group is the only group active during the Covid Pandemic. Highly recommend that a person becomes involved with this Support Group.

  • KCFPF has started a program called Mentorship. This program will help people to find a mentor and to find volunteers to be mentors. You can learn from a mentor's experience with Pulmonary Fibrosis. Since everyone's experience with PF is different, always check with your doctor before acting on any recommendations or suggestions. Persons with PF, Lung Transplant Recipients, care partners and family members can request a mentor. KCFPF is also looking for mentors.  These mentors can be persons with PF, Lung transplant recipients, care partners and health professionals. You can volunteer at Mentorship.

  • Online Support Communities: Can be a good source for information. Make sure you check with your doctor when someone suggests a medication, exercise and other treatments. Also, the Online Support Groups can be very emotionally taxing when hearing other people's experiences with PF.

  • The Pulmonary Fibrosis Foundation provides telephone-based Support Groups.

  • Local services to help with food, housing, health, care, financial assistance, transportation (Aunt Bertha)

The American Lung Association is a great source for Pulmonary Fibrosis Support. Go to their webpage Find Support for Pulmonary Fibrosis

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