Foundation for Mitochondrial Medicine

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Foundation for Mitochondrial Medicine

MCN: Mitochondrial Care Network

Mitochondrial Care Network

FMM Announcement

FMM Helps Spearhead Launch of First-of-its-kind Mitochondrial Care Network (MCN)

ATLANTA, July 20, 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 Foundation for Mitochondrial Medicine (FMM) has partnered throughout 2018 with MitoAction, the Mitochondrial Medicine Society and the UMDF to design and create an application and process for the launch of a formal care network for mitochondrial patients. “We are excited by the response of over two dozen applicants from multiple locations across the country and find this endeavor very promising for the mitochondrial patient community,” said Laura Stanley, Executive Director of FMM. “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.”

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.

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
  • Boston Children's Hospital
  • Children's Hospital Colorado and University of Colorado
  • Children's Hospital of Pittsburgh
  • Children’s Hospital of Philadelphia
  • Cleveland Clinic
  • Columbia University Medical Center
  • Cooper University Hospital
  • George Washington University/Children's National Health System
  • Icahn School of Medicine at Mount Sinai
  • Johns Hopkins University and the Kennedy Krieger Institute
  • Massachusetts General Hospital
  • Mayo Clinic
  • Seattle Children's Hospital
  • Stanford University
  • University of California, San Diego
  • University of California, San Francisco
  • University of Maryland School of Medicine and Medical System
  • University of Texas McGovern Medical School
  • Bruce Cohen
  • Irina Anselm
  • Austin Larson
  • Jerry Vockley
  • Amy Goldstein
  • Sumit Parikh
  • Michio Hirano
  • Jaya Ganesh
  • Andrea Gropman
  • Pankaj Prasun, Brynn Webb
  • Hilary Vernon
  • Amel Karaa
  • Ralitza Gavrilova
  • Russell Saneto
  • Gregory Enns
  • Richard Haas
  • Renata Gallagher
  • Carol Greene
  • 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

MCN Consultants

  • Fran Kendall and Mark Korson, VMP Genetics

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.

For more information, please contact info@mitonetwork.org. More information on the partnering organizations is available at www.mitochondrialdiseases.org; www.mitoaction.org; www.umdf.organd www.mitosoc.org.

 

MCN Application Request

The Request for Mitochondrial Care Network Application can be found at: https://goo.gl/qXaiP4.

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