"'Professor B' made this video about his sister's suspected mitochondrial disease as part of a video contest through the United Mitochondrial Disease Foundation's awareness contest."

-Story from a parent advocate

Click to watch Professor B's video!

Care Coordination Notebook: Financing and Managing Your Child’s Health Care- Partnership for People with Disabilities and Parent to Parent of Virginia

“My daughter, Alana, was born with a chromosomal difference, Tetrasomy 9p. I wrote a story about Alana’s uniqueness to share with her peers. I used it to share her story with her cousins, classmates, and children at her after school program. The story is only 8 slides long, but it packs a huge message about understanding each person’s individual needs."

Click here to read Alana’s Story. 

In Our Own Words: Using Family Stories to Teach Family Centered Care- Parent to Parent of Vermont

Being a Good Patient- The Oley Foundation

Speaking Up for Better Care- The Oley Foundation 

Workshop for Parents around Medical Homes (Sample)- Statewide Parent Advocacy Network (SPAN)

My Health Passport- English Version- Florida Center for Inclusive Communities

My Health Passport- Spanish Version- Florida Center for Inclusive Communities

Partnering with Your Doctor: The Medical Home Approach- Region 4 Genetics Collaborative 

Meeting Tip Worksheet- Parent to Parent of Virginia

Ten Ways to Be Prepared at a Doctor Visit- Empowered Patient, Ten Things Patients Should Know Series

Getting the Help You Need In The Hospital- Empowered Patient, Ten Things Patients Should Know Series

Ways Patients Can Help Prevent Medication Errors- Empowered Patient, Ten Things Patients Should Know Series

Important Documents and Forms- Empowered Patient, Ten Things Patients Should Know Series

Important Questions for your Hospital Care Team- Empowered Patient, Ten Things Patients Should Know Series

Be Prepared For Your Surgery- Empowered Patient, Ten Things Patients Should Know Series

My Health, My Decision- Resource Connections, Inc.

Speak Up! Action Manual for Peer Leader Teams- Acting for Advocacy

Talking With Your Doctor and Other Health Care Professionals-Video- Institute for Child Health Policy at the University of Florida, Health Care Transition Initiative

Hospital Discharge Questions for Families of Children with Special Health Care Needs- Family Voices of California

Link to English Version

Link to Spanish Version

Link to Chinese Version

Being a Healthy Adult: How to Advocate for Your Health and Health Care- Kathy Roberson, M.S.W, The Boggs Center on Developmental Disabilities

Finding the Missing Pieces: National Underinsured Resource Directory- Patient Advocate Foundation

Family-Centered Care Self-Assessment Tool- Family Voices