Patient & Family Partner Program

About Us
The Adult Cystic Fibrosis Patient & Family Advisory Council (PFAC) serves as a bridge between the patient community and the clinic. Our goal is to identify and address challenges to a high-quality patient/family partnership with the provider, drawing from our expertise in living with and managing a highly complex chronic disease. We aim to represent our fellow patients and loved ones as cystic fibrosis standards evolve in the era of highly effective modulators.

Recent Accomplishments

• Recruitment
  One of the PFAC’s biggest accomplishments this year was the recruitment of a more diverse group of members, including caregivers, people of color, and people without access to cystic fibrosis transmembrane conductance regulator modulator therapies. This is particularly important because family members and loved ones are an essential part of the care team for people with cystic fibrosis. Up until this year, the PFAC did not include family member representation. Additionally, cystic fibrosis has historically been thought of as a “white disease.” As understanding of genetics and manifestations of cystic fibrosis has become more sophisticated, we now know that this is not true. People of all races are impacted by cystic fibrosis, and people of color are more likely to be diagnosed later, which leads to worse health outcomes. People of color are also less likely to have access to cystic fibrosis transmembrane conductance regulator modulators, a highly effective therapy that has transformed the lives and prognosis of 90% of people with cystic fibrosis. The addition of members of color who do not have access to modulators has provided a unique and invaluable perspective to the PFAC. The cystic fibrosis community has committed to leaving no one behind, so incorporating the input and experience of people with cystic fibrosis without access to modulators is of the utmost importance in any advocacy work. 
• Welcome Bags
  The PFAC created and distributed welcome bags to patients new to the Cystic Fribrosis clinic. The welcome bags were carefully curated by the PFAC to include items that would be useful to patients, including cough drops, warm slippers, microwave sterilizer bags for nebulizer equipment, high-quality reusable masks, and more. The goal of the welcome bags is to support patients through the emotionally difficult transition to a new clinic.
• Disaster Preparedness
  The PFAC created a resource specifically for people with cystic fibrosis on disaster preparedness. As climate patterns continue to change, major weather events and disasters are now an expected part of living in California. People with chronic illnesses face unique challenges when power goes out or there are other unexpected disasters or emergencies. People with cystic fibrosis, for example, typically have medications that need refrigeration, or they need access to sterile water for their medical equipment. The cystic fibrosis PFAC consulted with No Person Left Behind, a one-stop resource for people with disabilities, to determine the highest needs of people with cystic fibrosis in a disaster.

Looking Ahead

In 2025, the PFAC aims to recruit additional caregivers, family members, or support people. They plan to increase awareness of and involvement in current and upcoming CF research, both at the clinic and national levels. They will develop roles within the committee for tracking information and building knowledge for the whole PFAC.

To support their community, the PFAC will create a resource to support caregivers of people with CF, as well as investigate and potentially implement new ways to support people with CF receiving inpatient care under the new structure of care. The PFAC also plans to support the Stanford Health Care CF program around recent and continuously evolving changes around inpatient care of people with CF.

Additional areas of interest in 2025 include investigating ways to support people with CF in Southern California impacted by recent wildfires, meditation and mindfulness strategies for coping, legislative advocacy, and collaboration with the pediatric CF Family Advisory Council