The MSA coalition is the largest non-profit foundation in the US supporting patients/families and researchers in multiple system atrophy, which is a relatively rare but devastating neurodegenerative disease. The Purpose of the MSA Center of Excellence program, which is new as of 2023 (2023 was the first year), is to provide access to the best possible multi-disciplinary clinical care and supporting services for individuals affected by MSA and their families through a geographically diverse network of local and/or regional clinical centers. This designation puts our center (and UNC) on the map as experts in MSA, acknowledging the excellent interdisciplinary care that we provide for these patients. It also comes with funds to support our outreach, education, and clinical care in MSA.
From the MSA Centers of Excellence Terms and Agreements:
The Purpose and Value of COE Designation
Multiple System Atrophy (MSA) is a rare but devastating, progressive neurological disorder that is characterized by a variable combination of symptoms including parkinsonism, cerebellar and pyramidal tract signs, and autonomic dysfunction. As the name of the disorder alludes, MSA can affect multiple systems including blood pressure/cardiovascular, urogenital, gastrointestinal, sleep, pulmonary, psychiatric, and even cognition. For any one patient and their care partner(s), this multitude of symptoms can be overwhelming and requires a dedicated interdisciplinary team and requires a coordinated effort – “a village” – and support system. MSA interdisciplinary clinical care should ideally include exemplary sub-specialty care, support services, education, outreach, and research opportunities for MSA patients, care partners, and family members.
The goal of the MSA Center of Excellence (COE) program is to provide access to the best possible and easily accessible multi-disciplinary clinical care and supporting services for individuals affected by Multiple System Atrophy (MSA) and their families through a geographically diverse network of local and/or regional clinical centers. In addition to coordinating care with both clinical and social services, the Centers will provide professional and lay education in the areas they serve, will be involved in, and inform patients of MSA clinical research, and collaborate with The MSA Coalition in its efforts to continually improve the lives of those affected by MSA.
The vision of The MSA Coalition is to create the standard of care in the United States in which patients, care partners, and their families are referred to MSA COEs that will provide the necessary sub-specialty expertise. Within these COEs, a multidisciplinary team will coordinate care to ensure those impacted by MSA receive a comprehensive, gold-standard, continuum of care