Join Canadian Parent Advisory Board members, Elisabeth Mellinger and Michelle Proctor-Simms, for a Canadian family zoom meet-up on September 20th at 5pm ET to talk and share stories about raising a child with a rare syndrome in Canada. Topic: OCNDS/CSNK2A1 Canadian Family Meet up Time: Sep 20, 2021 05:00 PM Eastern Time (US and...
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Join Parent Advisory Board member, Rhiannon Cramer, for our monthly OCNDS family Zoom call where families can connect, ask questions and share their stories. This Friday, July 9th, at 4pm Eastern Time (here is a website to convert the time to your time zone: https://www.thetimezoneconverter.com/) Topic: CSNK2A1/OCNDS Monthly Family Zoom Call Time: Jul 9,...
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Our friends at Simons Searchlight have announced their 2021 Virtual Family & Research Conference and you’re invited! Here’s what you can expect: ● Presentations for general sessions are based on a daily theme: Science & Medical on July 30 and Services & Therapies on August 6. ● Plenty of time for Q&A throughout the...
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Our friends at the Child Neurology Foundation are hosting their inaugural Transitions of Care Patient Advocacy Summit, bringing stories and expert insights covering all stages of the transition process from pediatric to adult care. Join us June 15th-24th for multiple events focused on ensuring that young adults living with a neurologic condition and those...
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June 14, 2021 11:00 AM in Central Time (US and Canada) Our friends at the Child Neurology Foundation are hosting a webinar on June 14th to hear from a parent of child living with a neurologic condition and a child neurologist/sleep specialist about the importance of sleep management for our community. Get insights...
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Saturday, May 15th at 12pm PST (Check the time conversion for time in your area: https://www.thetimezoneconverter.com/) Kristen Didzoleit, an OCNDS parent & inaugural Parent Advisory Board (PAB) member, is leading an OCNDS Family Zoom Call for early intervention to entering school age children on May 15th at 3pm EST. A few PAB parents with...
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Sunday, May 16th at 2pm and 7pm, Claire Whitehill, an OCNDS parent and Parent Advisory Board member, is hosting a UK family Zoom call for UK families to connect and share their journeys. Here are the Zoom links. May 16th at 2pm Topic: UK OCNDS Family Meet Up (No. 1) (2pm) Time: May 16,...
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Wednesday - May 26, 2021 - 2:00pm ET Did you know that some rare disorders significantly impact oral health? Or that dentists can be important members of comprehensive care teams? Please join NORD, National Organization for Rare Disorders, for this engaging webinar on dental conditions associated with rare disorders. We will hear perspectives from...
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You are invited to a Q&A with Cora Taylor, Ph.D. on Friday, May 14 from 12:00 p.m. – 1:00 p.m. E.T.. Taylor will answer your questions about education and early intervention, diagnosing autism, sleep, feeding, toileting and behavioral interventions for people with autism or other neurodevelopmental conditions. You are invited to submit your questions...
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Today is International OCNDS Awareness Day. On April 5, 2016, lives were changed forever. On this day, 5 years ago, the first paper was published describing a brand-new syndrome called Okur-Chung Neurodevelopmental Syndrome, also known as OCNDS. Initially, there were 5 children identified in the paper with OCNDS. Soon these 5 children would be...
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