Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Before you read on, make sure to check out Part 1 of Emily's story. In Part 1, Emily discusses what Stickler syndrome is and her diagnostic journey. Today, we'll discuss coming to…
Living with a rare genetic disease like Stickler syndrome (Or “Sticklers”) isn’t a death sentence. If Emily Katharine wants people to know one thing, that’s it: that they are more…
The 2018 SIP National Conference This meeting is for anyone who is part of the Stickler syndrome community, such as syndrome experts, researchers, caregivers, patients, and their families. Registration $25/$60/$100…
4-year-old Dimi loves to hang out with other preschoolers his age, play in the park, and ride his bike like a regular kid, but his mother Frances is fearing his…
James Moran suffers with Stickler syndrome and with it, is writing a new play to get in touch with his humanity The Assassination of Pope Urban II is a piece…
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