Posts found in:
Legislation
April 16, 2021
Ohio PANS PANDAS Updates
WE HAVE A CALL TO ACTION for House Bill #488 that requires insurance coverage for PANDAS/PANS kids in...
March 27, 2021
ASPIRE Participates in Rare Across America
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...
March 14, 2021
Illinois PANS PANDAS Updates
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...
March 3, 2021
Parents Push for Legislation That Would Help Children Living With PANDAS or PANS
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...
February 23, 2021
ASPIRE signs on to letter to FDA regarding Complex Generics
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...
June 4, 2020
ASPIRE Series on COVID-19
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...
April 14, 2020
PANS Advisory Council in Texas
Governor Abbott Appoints Fourteen To Pediatric Acute-Onset Neuropsychiatric Syndrome Advisory Council Governor Greg Abbott has appointed Lisa Hardy, ASPIRE Board member along...
March 26, 2020
Co-Signs Letter Regarding “Buy American” Requirements on Medicines
New “Buy American” requirements on medicines would limit patient access to affordable medicines and increase the risk of drug shortages during the COVID-19...
March 23, 2020
Co-Signs Letter Highlighting Access Barriers Created by 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...
July 31, 2019
Marblehead mom urges lawmakers to support PANDAS/PANS bill
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...
July 15, 2019
High cost of treating PANDAS disorder leaves families in bind
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...