Purpose:  To understand general perceptions of KD, clinical trials, and potential treatments

This survey is being sponsored by Neurogene and supported by KrabbeConnect, Hunters Hope Foundation, and The United Leukodystrophy Foundation.  Neurogene is a biotech company focused on developing life-changing genetic medicines for patients and their families affected by rare, devastating neurological diseases.

Question Title

* 1. You are invited to provide personal insights in an online questionnaire format by answering questions around clinical trials for Krabbe disease and gene therapy. This data and related information will be stored (banked) in KrabbeConnect's database where this information can be used for future research projects. The de-identified (no names, address, or personal information will be shared) survey responses collected will be used by researchers and nonprofits working to advance new treatments for Krabbe disease. Completing this survey in full means you agree to your survey responses being used to help the Krabbe disease community reach a day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease.  We understand that some of these questions may be difficult to answer, especially if your child has passed away. Thank you for participating to assist in these important advancements.

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