News

COVID-19 Webinar for Those with Rare Diseases

Like the rest of the world, White Sutton families are struggling with the consequences of the COVID-19 outbreak. But the challenges faced by those with WHSUS and other rare diseases are unique and many individuals have conditions that place them at additional risk. On Tuesday, March 31st, the National Organization...
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Patient Registry Plans

Update (02/18/2020): We’ve officially launched our patient registry! If you’re interested in participating, you can begin the process here. Update: We’ve selected our patient registry platform, and are working to build out the questionnaire. If you’re interested in participating in the registry, please email contact@whitesutton.org and we will contact you...
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Non-Profit Status Update

It is with great excitement we share with you that our organization, The White Sutton Syndrome (WHSUS) Foundation, is now an official 501(c)(3) organization! What does this mean? This means that the WHSUS Foundation is now a non-profit organization that the Internal Revenue Service (IRS) recognizes as exempt from federal...
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Rare Disease Genetic Testing Webinar

Many White Sutton families have already gone through the process of genetic testing for WHSUS, but many more are still only just beginning the process. Many are still out there looking for answers, and may come across whitesutton.org during their search. If this is you, or if you’re interested in...
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Study Opportunity for White Sutton Families

UPDATE: This study is no longer accepting applicants. We have recently been made aware that Dr. Sutton and one of his associates, Dr. Nurit Batzir, are looking for study participants for research into White Sutton Syndrome. They are especially interested in patients who have gastrointestinal and sleep issues. Below we...
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Genetics Home Reference: Updated!

After several weeks of working with the staff of the Genetics Home Reference, Dr. Reid Sutton today announced that its entry for White Sutton Syndrome has been published. After reading through the materials myself, I am blown away: this is must-read stuff! With so much of the last few years...
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Social Media Accounts are Live!

White Sutton Syndrome Foundation now has a presence on social media! You can join the WHSUS community on Facebook, Twitter and Instagram today! Look for regular updates, events and engage with others in the WHSUS community as we strive to grow these forums into useful, relevant tools for WHSUS families.