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Mitochondrial Care Network (MCN) Launched

MitoAction, the Foundation for Mitochondrial Medicine, the United Mitochondrial Disease Foundation, and the Mitocondrial Medicine Society are excited to announce the formation of a first-of-its kind Mitochondrial Care Network. The goals of this collaborative effort on behalf of patient advocacy groups and the Mitochondrial Medicine Society include formally unifying clinicians who provide medical care to individuals with mitochondrial disease; define, design and implementing best practices in mitochondrial medicine; and optimizing management and care for patients with mitochondrial disease.

 

A Request for Application (RFA) was announced in January 2018 whereby any clinician in the United States who provides care to patients with mitochondrial disease could apply to join the pilot phase of the Network. Factors for consideration in the Network included, but were not limited to, current and prior patient volume, multidisciplinary approach and hospital/center support. The pilot phase of the Mitochondrial Care Network represents a diverse group of Centers that will help determine the full scope, clinical priorities, implementation of standards of care and long-term desired outcomes of the Network.  Based on expertise, experience, and geographic location, the following leaders will bring a diversity of thought and perspective to the newly formed network.  The network represents a significant and exciting step to address the needs of clinical care for many patients.  By working together, the groups plan to harmonize medical care throughout the U.S. by providing patients and patient families appropriate diagnosis and best practice care by expert clinicians.

 

The following centers and leaders were selected to participate:

 

Mitochondrial Medicine Centers:

Akron Children’s Hospital, Bruce Cohen

Boston Children’s Hospital, Irina Anselm

Children’s Hospital Colorado and University of Colorado, Austin Larson

Children’s Hospital of Philadelphia, Amy Goldstein

Children’s Hospital of Pittsburgh, Uta Lichter

Cleveland Clinic, Sumit Parikh

Columbia University Medical Center, Michio Hirano

Cooper University Hospital, Jaya Ganesh

George Washington University/Children’s National Health System, Andrea Gropman

Icahn School of Medicine at Mount Sinai, Pankaj Prasun & Brynn Webb

Johns Hopkins University and the Kennedy Krieger Institute, Hilary Vernon

Massachusetts General Hospital, Amel Karaa

Mayo Clinic, Ralitza Gavrilova

Seattle Children’s Hospital, Russell Saneto

Stanford University, Gregory Enns

University of California, San Diego, Richard Haas

University of California, San Francisco, Renata Gallagher

University of Maryland School of Medicine and Medical System, Carol Greene

University of Texas McGovern Medical School, Mary Kay Koenig

 

Affiliate Sites:

Children’s Hospital Los Angeles, Alvaro Serrano

University of North Carolina School of Medicine Department of Pediatrics Division of Genetics and Metabolism, Muge Gucsavas-Calikoglu

Children’s Mercy Hospital, Jean-Baptiste Le Pichon 

 

Consultants:

VMP Genetics, Fran Kendall and Mark Korson

 

The Mitochondrial Care Network Governance Board selected the Centers and clinicians for the initial pilot phase and eventual expansion of the Network. Members of the Board included Kira Mann, CEO of MitoAction, Laura Stanley, Executive Director for FMM, Phil Yeske, Ph.D., Science and Alliance Officer of the UMDF, Amy Goldstein, M.D., Amel Karaa, M.D., and Sumit Parikh M.D..