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Early Bird Deadline to Register for the 2018 World TSC Conference Ends June 1, 2018

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Co-hosted by the Tuberous Sclerosis Alliance and Tuberous Sclerosis Complex International (TSCi) and dedicated to the memory of Keith Hall, the 2018 World TSC Conference will bring together families and individuals with TSC, caregivers, healthcare professionals, researchers, a wide array of exhibitors, and others from across the globe. The conference will be held at the Hilton Anatole Hotel in Dallas, Texas July 26-29, 2018! Register by Midnight on June 1, 2018 to get the lowest rate for the conference. Full conference registration is only $249 per person and covers educational sessions; breakfast, lunch and dinner; break snacks; and exhibit hall access. After June 1 the rate goes up to $350 per person for a…

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Calgary TSC Family Conference – Registration Now Open!

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Please join TS Canada ST for a TSC Family Conference on May 5, 2018 from 10:00 am to 4:00 pm at the Hotel Alma at the University of Calgary in Calgary, AB. This educational conference will provide families with opportunities to learn more about TSC including updates on treatment and research.  Information on speakers and an agenda can be found here. There will also be a pre-conference workshop on behavioral manifestations and guidelines, also known as TSC-Associated Neuropsychiatric Disorders (TAND) starting at 9:00 am. If you have any questions, please contact Cathy Evanocho at clevanochko@cbe.ab.ca. THIS EVENT IS NOT AFFILIATED WITH NOR ENDORSED BY THE…

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Montreal Joint Conference

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CHU Sainte-Justine Hospital is proud to present a Neurofibromatosis and Tuberous Sclerosis Complex Joint Conference. The conference is being held May 11, 2018 at CHU Sainte-Justine Hospital with the professional portion (English) for Tuberous Sclerosis Complex being held from 8:30am to 12pm and the family portion (French) for Tuberous Sclerosis Complex being held from 1pm to 5:15pm. Program and additional details can be found here. Register here.  

Calgary TSC Conference – May 5, 2018

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Save the date! Join TS Canada ST on May 5, from 10:00 to 2:00 (approx) for a TSC conference at Alberta Children’s Hospital, Calgary, AB. Speakers include Dr Fraser, Pulmonary specialist, Dr Bissler, nephrologist and researcher,  Dr. Bello, paediatric nephrologist, and Dr Appendino, paediatric epileptologist. Registration will open March 26. THANK YOU to Novartis for being the presenting sponsor.

Toronto TSC Conference 2018 – Registration Now Open!

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Please join TS Canada ST  for a TSC Educational Meeting on March 4th from 11:30 AM to 5:00 PM at the Toronto Marriott Downtown Eaton Centre Hotel. If you’d like to attend this event you can RSVP online. The deadline to RSVP for this meeting is February 25, 2018. This educational conference will provide families with opportunities to learn more about TSC including updates on treatment and research.  Information on speakers and agenda can be found here: Toronto conference details and agenda We could not do this without our sponsors.  THANK YOU to Novartis for being the presenting sponsor. Thank you to SickKids…

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Toronto TSC Conference 2018

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Save the date!   Please join us on March 4th at 12:00 PM to 5:00 PM at Toronto Marriott Downtown Eaton Centre Hotel, 525 Bay Street, Toronto. This educational conference will provide families with opportunities to learn more about TSC including updates on treatment and research.  Additional information on speakers and registration will be available shortly. Toronto TSC Conference information

Webinar – Overcoming Treatment Challenges for Tuberous Sclerosis Complex (TSC): SEGA and the Future of Seizure Management

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Darcy A. Krueger, MD, PhD will present a CME/CPE/CNE-certified webinar entitled “Overcoming Treatment Challenges for Tuberous Sclerosis Complex (TSC): SEGA and the Future of Seizure Management” on January 25, 2018 at 5 pm Eastern. To register and learn more, please visit the AXIS Medical Education website.

TSC Research Opportunity – participants needed

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Understanding the impact TSC has on patients’ lives is a crucial part of efforts to improve access to effective treatment. Please tell us about your experiences with TSC in our online survey by accessing the link below at home. It will only take 10 minutes to complete! https://survey5.cobalt-sky.com/surve…/J2017aruk004/login.asp Additional Survey Instructions (French/English)

Special Education Information Call in Session – October 4, 2017 @ 8pm EST

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Children who have Tuberous Sclerosis Complex often have a variety of educational challenges, that can make school more difficult for them. Tune into this one-hour interactive session to hear about special education, how to work with your school, and what some of the educational challenges with TSC can be. We will talk about Individual Education Plans, Individual Placement and Review Committees, Educational Assistant support, and the role of resource and special education teachers. There will be an opportunity for some questions and answers at the end of the session This session will be facilitated by Dr. Jennifer Flinn, from the…

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Get involved in Rare Disease Day 2017!

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There are many ways to participate in Rare Disease Day 2017! The global theme for Rare Disease Day 2017 is research. Research brings hope to people living with rare diseases. Go here to find out how you can be involved: http://www.rarediseaseday.org/article/get-involved Another way to get involved is to tell CORD your story! CORD wants to hear from you! This is a great way to raise awareness about this year’s theme: how research brings hope to those living with rare disorders. Send us your testimonials!  Go to:  https://www.surveymonkey.com/r/researchtestimonials

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