News

Announcing Our 2020 iPad Assistance Program!

15 Jun 2020
These are difficult times. It’s unlikely that there are many who are unaffected by the COVID-19 crisis. As a foundation, we have had to postpone our inaugural White Sutton Together conference, and have seen a drastic drop in the donations we depend on. As families, we have individuals we care...
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COVID-19 Webinar for Those with Rare Diseases

24 Mar 2020
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

28 Aug 2019
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

03 Jul 2019
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

08 Aug 2018
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

21 Jul 2018
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

Genetics Home Reference: Updated!

13 Jun 2018
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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