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Address: 3 Higgins Drive, VernonWeb: dessh.orgRevenue: 82183ICO: 834603164

Home | DeSanto Shinawi Syndrome Join the DeSantoShinawi SyndromePATIENT REGISTRYpowered by About Us DESSH Syndrome News Events Get Involved Legal and Privacy More DESSH is short forDeSantoShinawi Syndrome. DeSantoShinawi Syndrome is a rare neurodevelopmental genetic syndrome caused by a mutation or deletion in the WAC gene. DESSH is characterized by global development delay intellectual disability hypotonia dysmorphic facial features epilepsy and ocular gastrointestinal and behavioral abnormalities. WAC is identified as an autism gene.

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1. What are some effective strategies for increasing awareness and understanding of DeSantoShinawi Syndrome in the broader community and among healthcare professionals?

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Brooklyn Simmons
Brooklyn Simmons

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2. How can we better support families and caregivers of individuals with DESSH in terms of resources, advocacy, and creating inclusive environments?

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Brooklyn Simmons
Brooklyn Simmons

2 days ago

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Together, we can make a real impact in communities around the world. Help us bring hope and support.

What an inspiring group! Thank you for raising awareness about DeSantoShinawi Syndrome and the strength that comes from embracing our differences. 💖

Brooklyn Simmons
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I love reading these stories! Every journey is unique, and it's heartwarming to see families unite in support and understanding. Keep shining, Xman! 🌟

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