UMDF is excited to tell you about the progress made in the creation of a Mito Care Network!
Patient care is one of the three critical pillars of UMDF’s Roadmap to a Cure.
About the Mito Care Network
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..
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
- 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
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
- Fran Kendall and Mark Korson, VMP Genetics
- All sites will submit additional information including attestations of the site director, their institutions and subspecialists’ commitment to the MCN effort
- An MCN coordinator will be hired
- An MCN Medical Advisory Board will be formed and convened to help prioritize and execute the goals of the launch phase
Check back often to get UMDF updates on this critical piece to our Roadmap to a Cure!