Mitochondrial Disease Advocacy Groups Launch Mitochondrial Care Network (MCN)
ATLANTA, October 30, 2018 – The Foundation for Mitochondrial Medicine, MitoAction, the United Mitochondrial Disease Foundation, and the Mitochondrial Medicine Society 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.
The organizations partnered throughout 2018 to design and create an application and process for the launch of a formal care network for mitochondrial patients. 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. More than two dozen applicants from multiple U.S. locations were considered.
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 MCN represents a significant and exciting step to address the unmet needs of clinical care for many patients and result in better care for the future.
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:
- 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
- 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
MCN Affiliate Sites include:
- 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
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 Laura Stanley, Executive Director for FMM; Kira Mann, CEO of MitoAction, Amy Goldstein, M.D., Amel Karaa, M.D., and Sumit Parikh M.D. of the Mitochondrial Medicine Society; and Phil Yeske, Ph.D., Science and Alliance Officer of the UMDF.
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Jennifer Grizzle, APR, Fellow PRSA
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