Connecticut PANS PANDAS Updates
Connecticut PANS PANDAS Action Updates UPDATE – SB976 and NEW Call to Action SB 712 – An Act Designating PANS and PANDAS Awareness Day Past Bills and Reports Please follow...
Getting involved in advocacy is easier than you may think, but it is a critical advocacy effort. We need your help!
Start here: How to Assist with PANS/PANDAS Legislation for lots of fantastic information on getting started, including how to talk to your Legislators and ask for their support. See below for State Pages and additional PANS PANDAS Legislative Resources from ASPIRE. Email the Public Policy Committee today for more information on advocacy efforts in your state!
PANS and PANDAS are severe yet treatable neuroimmune disorders. Despite effective treatments like IVIG and antibiotics, many sufferers are denied care due to the lack of insurance coverage. Families often face an unsurmountable financial strain, leaving some patients without access to appropriate treatment, which can lead to a lifetime of suffering or devastating loss of life. Furthermore, schools absorb a significant financial burden of providing special educational and designated instructional services. Those fortunate enough to receive treatment experience life-changing improvements, as evidenced by survivors who went on to lead successful lives after overcoming PANS. However, the inequity in accessing care persists, leaving most without proper support or understanding. Urgent support is needed to ensure all affected individuals have access to essential medical interventions, enabling them to reclaim their lives and fulfill their potential.
We know that you, the State Leads, are hooked in with most everyone from your state but often new families find ASPIRE before finding state groups. But, ASPIRE is here to assist you. We can create State Pages (see below). We will help you share updates and Call to Action.
For all states working towards passing a bill, ASPIRE has two testimony letters that we can update for your state. One is from the Board of Directors and the other is from the Professional Advisory Board.
What we need from you:
If your state has both a House Bill and a Senate Bill running at the same time, please let us know how you would like ASPIRE to address the letters with that in mind. Some states want totally separate letters while other states allow you to include both bill numbers and address both House and Senate members in the same letter.
We are in the process of updating the legislative packets. If you would like to use the current version please email us.
We know that you, the State Leads, are hooked in with most everyone from your state but often new families find ASPIRE before finding state groups. So, ASPIRE is here to assist you. We can create State Pages (see below). We will help you share updates and Call to Action announcements.
Connecticut PANS PANDAS Action Updates UPDATE – SB976 and NEW Call to Action SB 712 – An Act Designating PANS and PANDAS Awareness Day Past Bills and Reports Please follow...
On November 13, 2020, The Texas Pediatric Acute-Onset Neuropsychiatric Syndrome Advisory Council met for the first...
Education Seminar All educators are invited to attend a seminar on PANS PANDAS. An overview of symptoms, diagnosis, treatment, and how it affects learning will be provided. Seminar hosted by...
Louisiana House Concurrent Resolution 89 -LA HCR89 LAHCR89 requests that the Louisiana Department of Insurance conduct a study concerning health insurance coverage for therapies and treatments...
Senate Bill No. 2203 SUB B Passes Senate Bill No. 2203 SUB B as amended and House Bill No. 7503 SUB B as amended have passed!! We are now waiting for...
HB2110 Passes! HB2110 is a pilot program that will provide coverage for PANS PANDAS under the state health care benefits program and collect data on the impact, utilization, and cost...
Washington House Resolution 4653 Passed Bill Information: HR 4653 – 2021-22- Honoring patients and families affected by PANDAS/PANS. Bill Status Link: Washington.Gov Link Bill Language:...
Virtual Voices for Mental Health program 2021 ASPIRE is again partnering with IOCDF on Virtual Voices for Mental Health program in which we call on our community to contact their...
ASPIRE has signed a letter to Congressman Schrader and Congressman Kinzinger to support the BIOSIM Act. This act would accelerate patient access to new biosimilar treatments by providing a temporary...
WE HAVE A CALL TO ACTION for House Bill #488 that requires insurance coverage for PANDAS/PANS kids in...
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...