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!
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. But, ASPIRE is here to assist you. We can create State Pages (see below). We will help you share updates and Call to Action.
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 legislators to ask...
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...
Rhode Island Update & New Call To Action Update! June 9th, 2021 The Senate Amendment Bill 064 passed the Senate! Woohoo!! But now we still need your help right now. It is not hard and does...
WE HAVE A CALL TO ACTION for House Bill #488 that requires insurance coverage for PANDAS/PANS kids in...
Are you in New York State? Help secure legislation mandating insurance coverage for PANS PANDAS in New York. No experience...
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...
After you meet with your legislator or one of their staff, please write a brief thank-you note. Make sure to concisely recap your discussion along with what you wish their next steps will be to...
Please sign a Proponent Witness Slip (links below) HB2472- requires the Director of Insurance to solicit information and data from health insurance carriers regarding insurance coverage for pediatric...
On November 13, 2020, The Texas Pediatric Acute-Onset Neuropsychiatric Syndrome Advisory Council met for the first...
WV needs your help asking legislators to support HB 2252: Requiring insurance coverage for treatment of pediatric autoimmune neuropsychiatric...
The deadline to make the first funnel is March 4th. Calls/emails really need to be made by Monday, March 1st as this committee generally only meets on...
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...