Mitochondrial Care Network Launched
Find more information at mitonetwork.org
On June 28, 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. More information including the list of centers can be found at the MCN website at mitonetwork.org.
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.