TSC In the News

Calgary TSC Conference – May 5, 2018


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!


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 Foundation for their sponsorship.

Montreal Joint Conference


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.


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


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 Board of Directors for TSC Canada. As an Ontario educator, her expertise is in Ontario policy, however, much of the information will be applicable to all provinces.

Join us October 4th, 2017 at 8pm EST by calling 1 866 276 0948 ID# 7438904

Get involved in Rare Disease Day 2017!


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

Rare Disease Day


February 28, 2017 is Rare Disease Day! Everyone has a role to play in furthering rare disease research. Go to rarediseaseday.org to find out more.

December 1-7 is Infantile Spasms Awareness Week 2016 (ISAW)

Because infantile spasms can be mistaken for other conditions or appear subtly, prompt diagnosis and appropriate treatment are critical for a child’s best developmental outcome – and that’s why we’re dedicated to raising awareness of this disease.

But awareness is just the first step – we also need more research. The first ever preventive epilepsy research project specific to infantile spasms in tuberous sclerosis complex (TSC) is beginning in the USA. Some researchers believe that by identifying abnormal brain activity prior to the onset of seizures, earlier intervention could prevent infantile spasms or other types of seizures. The study will recruit 80 infants with TSC (infantile spasms occur in an estimated 30% of children with TSC) at seven sites across the country.

Efforts like ISAW bring together advocacy organizations, parent/caregivers, industry, and frontline providers to educate the public about infantile spasms. The goal is to increase awareness and understanding of infantile spasms through education and research. The future is bright.

Please join us on social media using #ISAW2016 and visit www.isweek.org