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Communicating About Your Health

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boy dressed as professor explaining a condition

"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!

Resources

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, MSW, 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

 

 

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