How to help
How to help
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You helped us reach the FDA. Now, we need Congress to make sure they listen.
Right now, life-saving rare disease treatments are stuck in FDA delays, including a gene therapy for Sanfilippo syndrome, a disease that robs children of their ability to walk, talk, and eat.
To help us reach Congress, pick one or all three of the options below.
Add your information to this template letter and it will automatically be sent to your members of Congress.
Calls are even more important! Staffers track every single call that comes in to show members of Congress what is important. Staffers will simply be listening and taking notes, so don't stress!
Congress is at home until September 1. Now is your opportunity to call and request to meet with them using the talking points we've prepared. You don't have to be an expert! Meetings can be in person or virtual.
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