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MitoAction

MitoAction

Support, Education, Outreach and Advocacy for Children and Adults Living with Mitochondrial Disease

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Medical Child Abuse

Mito Navigator Toolkit

This Toolkit can help patients, families and caregivers better navigate the medical system and feel more equipped to respond to any issues should they arise.

Navigating the Medical System

MitochondrialRelated to the mitochondria. disease is a complex illness. Due in part to the fact that mitochondria can be found in every cell of the body (except red blood cells), mitochondrial disease has the potential to impact every organ, tissue and cell. Because of this complexity, navigating the medical system—with multiple specialists, therapists, practitioners and support staff—can sometimes prove to be overwhelming and difficult.

And to make things even more complicated, Mito patients and families often become the subject of Munchausen Syndrome, Munchausen Syndrome by Proxy (MSBP) and Medical Child Abuse allegations.

In an attempt to assist individuals in navigating this Mito world and improving the care for themselves or a loved one, we have created this Mito Navigator Toolkit. We hope this content can help families better navigate the medical system and feel more equipped to respond to any issues should they arise.

There are three key areas this toolkit will focus on Communication, Medical Records and Support.

Communication

Clear and open communication is critical to the management of mito, and can also help avoid allegations of Munchausen’s Syndrome or Medical Child Abuse.

Learn More

Medical Records

Gathering and maintaining a complete set of medical records helps you get the most out of each doctors appointment, and also serves as a sound defense to any accusations of Medical Child Abuse that might arise.

Learn More

Support

Support for patients and caregivers is essential for weathering the ups and downs of life with mitochondrial disease.  Learning how best to access that support is essential for the prevention of Medical Child Abuse allegations.

Learn More

Upcoming Events

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May 8
8:15 pm

FAOD Monthly Evening Support Call

May 9
12:00 pm

Weekly Support Call

May 9
12:00 pm - 1:00 pm

Expert Series: How to Keep Airways Clear and Breathing Great – Bulbar Function and Respiratory Muscles

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Expert Series

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May 9
12:00 pm - 1:00 pm

Expert Series: How to Keep Airways Clear and Breathing Great – Bulbar Function and Respiratory Muscles

May 15
7:00 pm - 8:00 pm

Expert Series: Serial Casting and Toe Walking

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Last Presentation

Expert Series: How to Keep Airways Clear and Breathing Great – Bulbar Function and Respiratory Muscles
Presented April 11, 2025

P.O. Box 310
Novi, MI 48376
(888) 648-6228
info@mitoaction.org

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