Date: 02/25/2025

Tera Grasser has begun to use her voice to advocate for those with ichthyosis. Last year, she traveled to the headquarters of BioCryst Pharmaceuticals in Birmingham, Alabama. BioCryst is doing research on Netherton Syndrome and she was able to share her story about living with Netherton Syndrome. It is so important for those performing research to understand the daily issues surrounding Netherton Syndrome. They will use the invaluable information to help plan for their clinical trial.

This week, she travelled to Washington, DC for Rare Disease Week on Capitol Hill. This multi-day conference, hosted by EveryLife Foundation, brings together rare disease advocates from across the country. They are provided the tools and knowledge to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress. 

This year the legislative asks are:

1. Ensuring steady and robust federal bio-medical research funding and public health agency support.
2. Re-authorize the rare pediatric disease priority review voucher (PRV) at the FDA.
3. Pass the Accelerating Kids Access to Care Act (AKACA)
4. Join the Rare Disease Congressional Caucas

Thank you Tera!