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.

Update: in light of an astonishing response, we’ve paused the Biogen patient registry study. See our update.

AGS Families,

We have an opportunity for you to make a meaningful impact on the development of an AGS clinical trial. We'd like to invite you to participate in a patient registry study sponsored by Biogen aimed at understanding AGS better and improving the clinical trial development process.

💡 Why Participate?

Make a Difference: Your valuable insights will contribute to advancing a Biogen clinical trial in AGS and potentially lead to a more effective and convenient clinical trial.

$50 Amazon Gift Card: As a token of appreciation for your time, Biogen is offering a $50 Amazon gift card to everyone who completes the survey.

30 Minutes Well Spent: The survey will only take about 30 minutes of your time, but the impact it can have on AGS research is immeasurable!

👉 How to Participate:

1. Click on the survey link below to get started:

2. Complete the survey with your honest responses.

3. Share this information with other AGS families to maximize our collective impact.

🌐 Learn More:

To delve deeper into the world of AGS research and clinical trial development, consider these resources:

• AGS Patient Registry: Stay connected with the AGS community and access valuable information. Link to AGS Patient Registry.

• Biogen Webinar: Discover more about Biogen's commitment to AGS research in our first webinar. Link to the Webinar.

Let's unite as a community and contribute to a brighter future for those with AGS. Your involvement is significant, and together, we can make a real difference.

Thank you for being the incredible AGS advocates that you are. Let's spread the word and make AGS history together!