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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.

The Rare PFAC members have walked the journey of having a child with a rare condition. Some have answers and some are still searching. They created this video because there are many of us in the rare community and you are welcome here.

Watch the "Rare Diseases Are Not Rare!" video.


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

DeeJo Miller
Director, Patient and Family Engagement, Office of Patient Experience

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.