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Resource Type: Expert Series



Navigating the Financial Minefield of Genetic Testing

There are so many misunderstandings and misconceptions of genetic testing. Join Dave Keane as he clarifies these issues, and provides tools to empower patients to participate in their care...


Cardiac Complications with LCHADD

Cardiac complications were often identified in symptomatic infants and children before newborn screening. Cardiac dysfunction can re-emerge or present for the first time during metabolic crisis at any age....


LCHADD Retinopathy

The underlying cause of LCHADD retinopathy is not fully understood. This presentation will look at the research that identifies the cell in the eye that is initially affected and...


Medical Child Abuse and Mito: Safeguarding your Family

A child who has a diagnosis of mitochondrial disease has a significantly higher risk of being removed from the home by Child Protective Services (CPS).   Attorney Beth Maloney...


LC-Fatty Acid Oxidation Disorders: Recent Updates on the REN001 Study

There was much discussion about current research in FAODs at the 2022 International Metabolic conference. Reneo Pharmaceuticals recently released positive results from the REN001 Phase1b LC-FAOD Study.  Dr. Alex...


The In’s and Out’s of the CHOP Mito Clinic

Mitochondrial Medicine at Children’s Hospital of Philadelphia (CHOP) is emerging as the premiere center in the world for multidisciplinary clinical care, advanced diagnostics and therapies, and individualized basic, translational,...


Exercise and Nutritional Issues in Mitochondrial Disease

Join MitoAction and Dr. Mark Tarnopolosky to discuss: What exercises are good for mitochondrial disease and how do we exercise safely? Are there any diets or dietary concerns for...


7 Simple Strategies for Sibling Support

Siblings of children with disabilities play important roles in their families, and often experience similar concerns and opportunities as parents. This session will present some common issues that siblings...


The Menstrual Cycle as a Vital Sign in Navigating Rare Disease

Join MitoAction and board-certified family physician and Adjunct Associate professor of medicine at Georgetown University, Dr. Marguerite Duane, to explore the impact of the female menstrual cycle as a...