Moving Forward Together: UBE2A Community Research Update

We’ve reached an exciting milestone: Phase 1 data collection is complete! A huge thank you to everyone who participated in interviews or focus groups. We gathered valuable insights from 24 participants across 9 different countries and 9 states in the US.

What’s Next?
We’ll spend the first few months of 2025 analyzing interview and focus group results. Based on what we learn, we’ll create survey questions for Phase 2, which we plan to launch in the spring.

Phase 2: Surveys in Action
Phase 2 will involve waves of surveys throughout spring and summer 2025. Here’s how it will work:

• Launch a Survey: We’ll send out a survey on a key topic.
• Analyze Results: We’ll review responses and learn from them.
• Share Findings: We’ll update the group on what we’ve discovered.
• Repeat: We’ll move on to the next important topic.

This process keeps surveys shorter and more focused, making them easier to complete while ensuring you see results quickly.

Your Participation Matters
The more people who complete surveys, the stronger our data will be. We appreciate your full participation and support!

Stay Connected
​This is a community-led project, and your voice is essential. Together, we’re building something meaningful and impactful.