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Rare Patient Family Advisory Council

Graphic of four hands reaching for a heart and the words: PFAC patient family advisory council RARE

The Rare Patient Family Advisory Council will work in partnership with the Children’s Mercy staff members to advocate on behalf of families for the best quality of care. The council will serve as a resource for parents or guardians to provide input on policies and procedures, enhance communication, and expand education for patients and families in both inpatient and outpatient settings. Visit our Genetics Clinic page for more information on how this clinic can help with a variety of inherited conditions and genetic birth defects your child may have.

"Life, Love, and Rare Disease" is a short video that connects the viewer to the life behind a rare disease diagnosis. It also provides information about the prevalence of rare diseases and shows the impact research can have on the quality of life for patients and families. The video earned honorable mention for the NCATS (National Center for Advancing Translational Services) "Rare Diseases Are Not Rare!" 2020 challenge. Kelly Ranallo and Mindy Bridges are Rare PFAC members who helped with the video's creation and submission.

Watch the "Life, Love, and Rare Disease" video.

Application

If you have read through the bylaws and feel like this committee would be a good fit for you, please fill out an application.

Contact Us

Janell Ridenour
Parent Chair
janellstadler@gmail.com

Josi Wood
Parent Co-Chair
josiwood@yahoo.com

DeeJo Miller
Patient and Family Engagement Program Manager
dkmiller@cmh.edu

Parents Offering Parent Support (POPS)

Children's Mercy offers a program called Parents Offering Parent Support (POPS), a network of trained parent volunteers who mentor other parents through the challenges of their child's health condition. Click the button below to learn more about requesting the support of a mentor or becoming a mentor yourself.