TSC In the News

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

Rare Disease Day

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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)

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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

A Successful Conference!

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TS Canada ST and BC Children’s Hospital were pleased to present the 2016 Vancouver TSC Educational Conference this past month where sessions were provided by both local and international experts on TSC.  A special thanks goes to Dr. Mary Connolly who was instrumental in making this conference happen as were all of our sponsors:

Title sponsor: Novartis

Silver sponsors: Eisai Limited and UCB Canada Inc.

Bronze sponsors: BC Epilepsy Society and Tuberous Sclerosis Alliance

Many of our sessions were recorded on video.  Browse through the conference videos here

We look forward to providing more of these important education meeting in the future!

2016 Vancouver TSC Educational Conference

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**NEW VENUE, NEW LOWER REGISTRATION FEES**

Join Us for the 2016 Vancouver TSC Educational Conference on September 16-17, 2016 in Vancouver, BC!

This one and a half day conference features leading researchers and clinicians specializing in TSC (both local and abroad) and will provide information on the latest research updates, diagnosis and treatment of TSC in both pediatrics and adults.

To register and for additional conference details, please click here

Vancouver Educational Meeting Flyer

TSC Global Awareness Day Video

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On May 15, organizations around the world celebrate Tuberous Sclerosis Complex (TSC) Global Awareness Day.v

RESEARCH OPPORTUNITY FOR TUBEROUS SCLEROSIS PATIENTS AND CAREGIVERS

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A major pharmaceutical manufacturer has commissioned market research to understand the unique experiences of TSC patients and their caregivers.

Your participation in this project will help to expand on new treatments, as well as enhance awareness and improve education about TSC.

Please click here for additional information.

 

 

Tuberous Sclerosis Canada Sclérose Tubéreuse and Tuberous Sclerosis Alliance Announce Formal Partnership

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In celebration of TSC Global Awareness day, Tuberous Sclerosis Canada Sclérose Tubéreuse (TS Canada ST) and the Tuberous Sclerosis Alliance (TS Alliance) are proud to announce they have joined in a partnership that will enhance community support, clinical care and research efforts in North America.

For complete details see our official joint statement.

JOINT STATEMENT TS Canada and TS Alliance

ANNOUNCING THE 2016 Vancouver TSC Educational Conference

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September 17th, 2016 * Vancouver, BC.

TS Canada ST in partnership with the TSC Clinic at BC Children’s Hospital is pleased to announce the 2016 family education conference for those with Tuberous Sclerosis Complex (TSC), their families and their caregivers.

This one –day conference will feature leading researchers and clinicians specializing in TSC (both local and from abroad) with topics relating to the latest research, diagnosis and treatment of TSC in both pediatrics and adults.  This conference will help you CONNECT with others, CONQUER the many challenges of TSC and CELEBRATE the hope of new treatments.

Plan now to join others affected by TSC along with leading TSC physicians and researchers.  Additional information regarding the agenda, registration and hotel information will be released in the following month.

Here are just some of the topics to date with more to follow, so stay tuned and save your spot early!!

  • Early diagnosis of TSC and the impact of genetics on diagnosis
  • Diagnosis and best practice in the management of Epilepsy in TSC and potential for prevention of epilepsy
  • The Neuropscychiatric problems in TSC: Diagnosis and Management
  • Behaviour problems in children with TSC
  • Management of Mood disorders in TSC in adults
  • Skin problems in TSC
  • Impact of mTOR inhibitors in the treatment of TSC/ new treatment for epilepsy
  • Renal disease in TSC: Prevention of complications/treatment
  • LAM disease in TSC

Pre-register now by emailing TSCconferenceVancouver@gmail.com