Mitochondrial Care Network Launched
On June 28, 2018 the formation of a first-of-its-kind Mitochondrial Care Network was announced. This collaborative effort on behalf of patient advocacy groups, the Foundation for Mitochondrial Medicine, MitoAction, the United Mitochondrial Disease Foundation as well as the mitochondrial disease clinician society, The Mitochondrial Medicine Society, has goals to formally unify clinicians who provide medical care to individuals with mitochondrial disease; to define, design and implement best practices in mitochondrial medicine; and to optimize 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 Mitochondrial Governance Board sought a diverse group of Centers for the pilot phase to 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 forming network. The network 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 by providing appropriate diagnosis and best practice care by expert clinicians, to patients and patient families throughout the US.
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, Jerry Vockley & Uta Lichter-Konecki
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:
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
Mitochondrial Disease Clinician and Support Provider Map (Global)
The Mitochondrial Medicine Society is pleased to offer a live Google map of the Mitochondrial Global Networks.
Map “layers” include Mitochondrial Medicine Specialists (clinicians), Mitochondrial Support Groups, Mitochondrial Medicine Networks, North American Mitochondrial Disease Consortium (NAMDC) sites, and Patient Registries.
The map data is accessed by clicking the ‘index’ photo at the top left of the map.
The map is a continual work in progress, administrated by Amy Goldstein. For corrections, additions, suggestions, please email her at dramygoldstein at gmail.com.