RARE-X Enrollment Party
Ogden Families – you’re invited to the RARE-X ENROLLMENT PARTY!
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Your child is newly diagnosed – This is a chance to meet “face to face” with some of our community members while also providing crucial information to answer the question “What is Ogden Syndrome?”
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You’ve been hesitant to enroll because you do not speak English – Don’t worry! The surveys can be translated into many languages, and you can follow the video of the enrollment process if you need help.
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You’re hesitant to put your information and that of your child out into the world – We’ll have RARE-X reps on the call to help answer any questions about data sharing and privacy!
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You’re confused about how to enroll and get started – Don’t worry; we’ll walk you through it, step by step!
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You think you might have already done this, but you’re not sure – Jump on the call! We’ll help you get logged in and make sure you’re completely up to date.
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You haven’t updated your surveys in awhile – New surveys come out all the time, and our kids’ symptoms change all the time! We need to continuously capture data to make sure that we have updated, correct information.