We plan to create a patient registry as we grow, in order to help patients connect with each other, as well as with doctors and researchers. In the meantime, we administer a community on RareConnect that you are welcome to join.
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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