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Register a Patient

We are currently working with our registry platform and medical advisory board to build out our patient registry. Why are we focusing on building a registry? Here’s why. If you’re interested in participating in the registry, please email
to let us know, and we’ll contact you when the registry is open.

Get Involved

We’d love to put you to work! A lot of parents and family members feel helpless when someone they love is diagnosed with White Sutton Syndrome or another condition, but there’s plenty to do. Whether it’s donating, fundraising, encouraging or meeting the needs of other WHSUS families, becoming a foundation point of contact in your region, offering your talents to the foundation, or anything else, we’d love to hear from you! Please reach out by chatting with us or using the contact form below. We look forward to hearing from you!

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Stay informed about new research, upcoming events and other foundation updates. Don’t miss things!

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