Community
Your hub for everything Duane Syndrome — blog posts, mentors, podcasts, and connections.
Advocates
Inspiring people who have Duane Syndrome — proving it doesn't define or limit what you can achieve.
Listen to their stories, browse through the comments — it's much more common than you think.
Blog
Posts and insights from the community.
This is our first blog post, exciting!
After a Duane Syndrome Diagnosis: 8 Key Tips
After a diagnosis of Duane Syndrome, parents may feel overwhelmed, but understanding the condition and learning practical ways to support their child can make a huge difference. With regular check-ups, simple daily adjustments, and the right mindset, children with Duane Syndrome can thrive and live full, confident lives 💙
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Note Board
Find a mentor or become one. Leave a note for the community.
Adult with Type 1 DS in the left eye. Had surgery at age 7. Happy to chat with parents of newly diagnosed kids about what to expect, school tips, and when surgery might help. Based in the US (EST timezone).
Contact: Email me through the site
Parent of a 4-year-old recently diagnosed with Type 1. Looking for other parents who can share their experience — especially about the surgery decision. We're in Israel.
Contact: Email me through the site
Teen (17) with bilateral Type 3 DS. Been dealing with this my whole life and I'm happy to talk to other teens who feel alone or different. It gets SO much better, I promise.
Contact: DM on Instagram
Podcasts
Listen to discussions about Duane Syndrome from experts and advocates.
Spotify
Life with Duane by Madaline McCabe
Apple Podcasts
Duane Syndrome with Dr. Srav Vegunta
Spotify
Peyton's Duane Syndrome
Communities & Groups
Join the global Duane Syndrome community across platforms.
Duane Syndrome Facebook Group
Active Facebook group with over 3,000 members. Parents, patients, and doctors share experiences and advice.
r/DuaneSyndrome (Reddit)
Reddit community for discussing Duane Syndrome — medical questions, life experiences, and research updates.
Duane Syndrome Foundation
Non-profit organization dedicated to raising awareness and funding research for Duane Retraction Syndrome.