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Multiple system atrophy: Building a global community – 30years of advocacy efforts

Published:December 16, 2017DOI:https://doi.org/10.1016/j.autneu.2017.12.006

      Highlights

      • Multiple system atrophy (MSA) is a rare, progressive neurodegenerative disease with no available disease modifying treatment.
      • Awareness by medical practitioners about multiple system atrophy as a diagnostic possibility is severely lacking.
      • Lack of awareness of the disease has amplified the unmet needs of multiple system atrophy patients and other stakeholders.
      • Since the 1980’s a growing movement to highlight the plight of those affected by multiple system atrophy has emerged.
      • Stakeholders are uniting to attack MSA from a global perspective in the hopes of improving outcomes for future patients.

      Abstract

      Multiple system atrophy (MSA) is a rare, progressive and ultimately fatal neurodegenerative disease with no known cause and no available disease modifying treatment. Known previously by various names including Shy-Drager Syndrome, olivopontocerebellar atrophy (OPCA) and striatonigral degeneration, MSA can be classified simultaneously as a movement disorder, an autonomic disorder, a cerebellar ataxia and an atypical parkinsonian disorder.
      Despite scholarly attempts to better describe the disease, awareness among medical practitioners about multiple system atrophy as a diagnostic possibility has been slow to catch on. As a result, patients often go undiagnosed for many years or are largely misdiagnosed as Parkinson's disease. The non-homogeneous clinical presentation of MSA and years of confusing nomenclature have all contributed to a lack of awareness of the disease among healthcare professionals as well as the public. This lack of awareness has amplified the unmet needs of MSA patients and other stakeholders.
      Since the 1980s there has been a growing advocacy effort directed at this rare disease from advocacy groups, grassroots supporters, healthcare professionals and research networks. These stakeholders are beginning to unite their efforts and attack the disease from a global perspective in the hopes of improving outcomes for MSA patients in the future.
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