Rare Across America Congressional Meetings Make an impact on federal policy from close to your home. Share your rare disease story. Meet other rare disease advocates. ASPIRE joined several...
Three laws have been passed to help PANS/PANDAS families with insurance coverage. Named after two of the children of the advocates that drove the legislation, Charlie’s Law of 2017, was...
DES MOINES, Iowa – This week brings one of the first significant deadlines at the Iowa statehouse. However, for some Iowa families dealing with a rare disease, one bill could bring hope. Parents...
ASPIRE cosigned the Association for Accessible Medicines’ letter to the FDA urging them to prioritize patient access to more safe, effective, and affordable complex generic medicines in Generic...
In response to the COVID-19, a global pandemic, that has affected all of our lives, ASPIRE is putting together a series of Q&As from a variety of professionals. We will be updating this resource...
Governor Abbott Appoints Fourteen To Pediatric Acute-Onset Neuropsychiatric Syndrome Advisory Council Governor Greg Abbott has appointed Lisa Hardy, ASPIRE Board member along...
New “Buy American” requirements on medicines would limit patient access to affordable medicines and increase the risk of drug shortages during the COVID-19...
ASPIRE has joined nearly 200 organizations by co-signing a letter from Everylife Foundation to leadership in all 50 states aimed at highlighting the unique access barriers created by the coronavirus...
One might think, because PANDAS/PANS strikes children, passing the bill would be a slam dunk, but Uttam said it’s failed twice in Massachusetts already. It has, however, passed in five other...
BOSTON -- Tiffany Uttam was facing every parent’s nightmare. Her nine-year-old son became abruptly ill, and no one could seem to help. He was suddenly anxious and paranoid, hallucinating and...
Parents push for coverage, awareness of rare syndrome. Local families grappling with a rare and elusive syndrome will make the case for greater acknowledgement and support at the State House...
In 2017, then-Gov. Bruce Rauner signed into law what was known as Charlie’s Law that required insurance companies to cover treatment costs for certain auto immune diseases in children. One...