Rare Diseases and Getting Coverage for Medical and Behavioral Therapies - Its Complicated

Rebecca Sargent, Patient Advocacy Leader for Bridge the Gap -  SYNGAP Education and Research Foundation, talks about some of the insurance coverage problems that are common for rare diseases such as SYNGAP that do not have an approved treatment or proper guidelines to help clinicians make informed decisions.
SYNGAP1 is a rare non-syndromic neurological disorder that causes intellectual disability. Approximately two-thirds of individuals with SYNGAP1 mutations suffer from some type of epileptic encephalopathies. In recent findings SYNGAP1 has been a gene linked to autism.  The percentage is unknown of how many of these individuals have been diagnosed with Autism. Several mutations in the SYNGAP1 gene were identified as the cause of intellectual disability.
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