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.
Mitochondrial Organizations Cooperate to Launch Pilot Phase of The Mitochondrial Care Network
ATLANTA, January 8, 2018 -- The Foundation for Mitochondrial Medicine (FMM), MitoAction, the Mitochondrial Medicine Society (MMS) and the United Mitochondrial Disease Foundation (UMDF) collectively announce an important new initiative to create a Mitochondrial Care Network (Network). The goals for the Mitochondrial Care Network, the first of its kind, are 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.
Any clinician in the United States who provides care to patients with mitochondrial disease can apply to join the pilot phase of the Network. Factors for consideration in the Network will include, but are not limited to, current and prior patient volume, multidisciplinary approach and hospital/center support. This exciting initiative offers clinical and scientific challenges, opportunities and rewards. Additionally, participants will play a pivotal role in identifying underserved patients and providing highly needed services for them, as well as contributing to an expanding knowledge base that promises better care for the future. Click here for the Request for Application.
Deadline for submission is February 28, 2018.
“We are excited about this major collaboration among the patient advocacy groups and the MMS because the Network will help continually improve the standard of care for mitochondrial disease in the United States,” said Amy Goldstein, M.D., President of the Mitochondrial Medicine Society. “The Network will be an organized group of individual Mitochondrial Medicine Centers (MMCs) that will build on current consensus guidelines for diagnosis and care and significantly improve patient outcomes by sharing knowledge. We strongly encourage all interested parties to apply.”
The organizations recognize that without collective knowledge of treatment guidelines, clinicians approach patients in a trial-and-error manner. Working together, the groups plan for a better defined natural history of the disease and better understanding by clinicians, patients and patient families.
“By combining our efforts and information base, the Network will offer consistency for proper evaluation and diagnosis for primary mitochondrial disease and provide comprehensive medical care to individuals with primary mitochondrial disease,” said Kira Mann, CEO of MitoAction. “We are enthusiastic that the Network will address the unmet needs of clinical care for many patients with mitochondrial disease and lead to an expanding knowledge base that will result in better care for the future.”
The Mitochondrial Care Network Governance Board will be responsible for final decisions on selecting Centers for the initial pilot phase and eventual expansion of the Network. Members of the Board include 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.
The Board seeks 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. For questions, please contact info@mitonetwork.org. More information on the partnering organizations is available at www.mitochondrialdiseases.org; www.mitoaction.org; www.umdf.org and www.mitosoc.org