What is the Mitochondrial Care Network (MCN)?
The MCN represents a group of physicians at medical centers across the country that have expertise and experience in providing coordinated, multidisciplinary care for patients with genetic mitochondrial disease. A complete list of MCN Centers can be found here.
The effort is a collaboration between mitochondrial physicians in the Mitochondrial Medicine Society and US based patient advocacy groups (Foundation for Mitochondrial Medicine, MitoAction, United Mitochondrial Disease Foundation).
Each MCN site director leads a team of physicians with expertise in caring for patients with mitochondrial disease.
The network was created to help improve the quality of mitochondrial patient care and implement best practices and standards of care in mitochondrial medicine. Over time, the MCN plans to determine the gaps in mitochondrial disease care and help improve diagnosis, treatment and patient outcomes.
To become part of the network, a physician has to show
A commitment to and focus on mitochondrial disease clinical care, having routinely cared for a large number of patients with genetic mitochondrial diseases
An academic and research interest in mitochondrial disease with regular scholarly activity in the field
The presence of a team of multiple specialists at their institution knowledgeable in mitochondrial disease
You can read more about how this network was created in an online journal publication at this link.
The initial network was launched on June 28, 2018 after a review of applications. A request for applications was announced in January 2018 whereby any clinician in the United States who provides care to patients with mitochondrial disease could apply. Those centers with appropriate experience and expertise were chosen to participate in the pilot phase. Over the coming months, the group will begin working on assessing immediate gaps in mitochondrial clinical care.
The project is currently governed and steered by members of the patient advocacy groups and MMS including Amy Goldstein, Amel Karaa, Kira Mann, Sumit Parikh, Laura Stanley & Phil Yeske.