Elly's Team has worked with a team of scientists and physicians to develop a novel gene therapy for IRF2BPL. The first patient received the therapy in April 2025 in New York City. Elly's Team will host a webinar to share our path to treatment with the IRF2BPL and NEDAMSS community and discuss expanding the clinical trial.

Please fill out this brief questionnaire to register for the webinar and help us select a date. Elly's team will use this information to send final details about the webinar.

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* 1. What is your first name?

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* 2. What is your last name?

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* 5. What is your connection to IRF2BPL and NEDAMSS? (Select all that apply)

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* 6. How old is the person you know with IRF2BPL?

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* 7. In what country do you live?

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* 8. In what state or U.S. territory do you live?

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* 9. What topics / questions would you like discussed at the webinar?

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* 10. Which of these dates would you be available to join a webinar about the gene therapy (select all that apply)?

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