78% of rare neurodegenerative disease treatments have been delayed since 2025. Thousands of people (primarily children) are suffering as a result.

The FDA continues to delay the approval of treatments for rare diseases that can save lives. We need more lawmakers to feel the urgency of what these FDA delays mean for families.

When more people speak up, it signals that this isn’t a niche issue but one that demands oversight and accountability by Congress.  The more people who reach out, the more likely Congress is to take further action. Please share with your networks.