Live Stream

Externally-Led Patient-Focused Drug Development Meeting for STXBP1-Related Disorders

Join us Live at 10 am ET on Friday, October 20, 2023

Want to talk to us live during the discussion sessions?
Please call 1 703-844-3231 when prompted.

*Due to time restrictions, we may not be able to get to all phone calls.

Respond to polling questions in real time!
Go to PollEv.com/STXBP1 and make your voice count!

Submit a comment below on one or more of the below topics.

Comments collected may be shared during the STXBP1 EL-PFDD and may also be used in the final “Voice of the Patient” report.

Of all the symptoms of STXBP1, which 1- 3 symptoms have the most significant impact on your loved one’s life?
How does STXBP1 affect your loved one on best and on worst days? Describe their best and worst days?
Are there specific activities that might be important to your loved one can they not do at all or as fully as you or they would like because of STXBP1?
What do you fear the most as you or your loved one gets older? What worries you most about your or your loved one’s condition?
What are you currently doing to manage your loved one’s STXBP1 symptoms?
How well do these treatments treat the most significant symptoms of STXBP1?
What are the most significant downsides to your loved one’s current treatments and how do they affect daily life? (Examples of downsides may include bothersome side effects, going to the hospital for treatment, etc.)