Research Study for Parents of Children with NVLD

The closing date for Part 2 of the survey has been extended to Saturday, July 31st

Attention: Parents of children (up to age 30) with NVLD who completed Part 1 of the survey!

With support from The NVLD Project, Dr. Prudence Fisher at Columbia University has put together a computer survey to learn more about individuals (ages up to 30) with NVLD from the perspectives of their parents (or caregiver, close relative, etc.).

Last year, 230 parents/caretakers completed the survey. The survey asked about their child’s experiences with NVLD and about a possible “name change” for NVLD. We are grateful to everyone for contributing to this research!

If you completed the Part 1 of the survey…

Recently an email was sent to those 230 parents asking them to complete a second part (Part 2) of the survey. So far, 90 people have completed Part 2 (thank you!) and 40 parents are part-way through (keep going!). We very much hope that everyone who completed Part 1, will consider completing Part 2. Part 2 collects more information about your child’s relationships experiences in school (or working), special talents, self-esteem, and other important areas of functioning.

Part 2 is scheduled to close before midnight EDT on Saturday, July 31st 2021.

If you are interested in completing Part 2 of the survey but cannot find the recent email, please reach out to

We hope that this research project will help us learn more about the life course of people who have NVLD.

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The NVLD Project
177 East 87th Street
Suite 501
New York, NY 10128