Update: Our patient registry project with Biogen has been completed as of January 2024 and we are now pivoting to our AGSAA Contact Registry and a partnership with Ciitizen to create an AGS Natural History Study by using patient medical records to unlock key insights and data for research and treatment opportunities - both launching April/May 2024.

Dear AGS Community,

We are absolutely thrilled to share some electrifying news with all of you today – the Biogen Patient Registry Study has exceeded our wildest expectations! Our community has rallied together, and we've already collected so many responses!

This remarkable response is a resounding statement. It's proof that our AGS community is far larger and more organized than many previously believed. It's a dynamic testament to our shared commitment to pushing the boundaries of AGS research and advocating for the betterment of all affected by this condition.

As we pause the study to analyze this wealth of data, we want to extend our heartfelt gratitude to each and every one of you who participated. Your unwavering support and active involvement have set a new benchmark for what's possible in AGS research. Together, we're shaping a brighter future for our community. With your energy and dedication, the sky's the limit for what we can achieve together!