Rare Patient Family Advisory Council
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.
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
DeeJo Miller
Director, Patient and Family Engagement, Office of Patient Experience
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.
- Family Advisory Board
- Teen Advisory Board
- Accessibility & Rehab PFAC
- Angelman Syndrome PFAC
- Beacon PFAC
- Cardiac PFAC
- Consejo de Familias Latinas y Hispanas
- Cystic Fibrosis PFAC
- Eating Disorders Center PFAC
- Fetal Health Center PFAC
- Food Allergy PFAC
- Hem/Onc/BMT PFAC
- Hem-Onc Teen Board
- IBD PFAC
- Kansas PFAC
- Kids KC Advisory Board
- Mental Health PFAC
- NICU PFAC
- Rare PFAC
- Tracheostomy PFAC
- About Us