2026 ECD Patient Poster Submission for the Birmingham, Alabama Meeting April 29-30. Thank you for sharing your ECD journey. Your story will be shared at the 2026 ECD Patient & Family Gathering to be held in Birmingham, Alabama, April 29-30, 2026. The information you submit will be printed on a poster to be displayed during the event. For your story to be included, you must submit your information no later than midnight on February 01, 2026. Before starting, make sure you have the following information available. Each answer has a Max of 350 characters, including spaces. 1. First Name, Last Name, Phone, Email Address, Age 2. The approximate date of your first ECD symptoms? 3. The approximate date you were diagnosed with ECD? 4. What is your mutational status? 5. Who am I? (information about things like marriage status, spouse, children, hobbies, occupation 6. What was my diagnostic journey? (who diagnosed you, how you were diagnosed, what you experienced/felt while you were searching for a diagnosis) 7. What are your treatments? (past treatments, present treatments, challenges, benefits, testing cycles) 8. How are you doing? (physical well-being, day-to-day activities, emotional status, coping techniques/challenges, social activities, working, retired, new interests, etc.) 9. What brings you hope? (family, your local community, the ECDGA community/organization, research, faith, response to treatment, etc.) Please only submit information you want shared with the ECD Community. If you have any questions about the Patient Posters, please contact Belinda Cobb at Belinda.Cobb@Erdheim-Chester.org. We look forward to seeing you in Birmingham!

The ECDGA Patient Poster submissions have closed.

For more information, please contact support@Erdheim-Chester.org.

Thank you.

Survey Close Date & Time: 03/25/2026 02:00 AM CST