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TSC In the News
PARTNERS (Patient Assisted Research Transforming National Effectiveness in Rare Diseases)
The Canadian Organization for Rare Disorders is pleased to “partner” with the PARTNERS initiative described in the attachments. The goal of the initiative is to engage with the rare disease patient community to design and develop new diagnostic and therapeutic interventions.
To complete the survey online, go here:https://www.surveygizmo.com/s3/2118051/PARTNERS-poster
If you would rather take part in the group interview, you can register for your local session here: http://partnersnetwork.eventbrite.ca
PARTNERS Consultation Poster PARTNERS Consultation Poster_FR
Rare Disease Stategy Possible in Canada
For more information please visit the links below.
Press Conference Video: youtu.be/Lta3kLNOesw?a
Global and Mail article: http://www.theglobeandmail.
Help support this endeavor and sign the petition: http://ow.ly/NosTk
Let’s Raise Awareness On Tuberous Sclerosis Complex (TSC).
National Post, Rare Disease Supplement. March 28, 2015 View…
Annual General Meeting
Tuberous Sclerosis Canada Sclérose Tubéreuse elected the Board of Directors and Executive committee at the Annual General Meeting on March 10, 2015. Election results are as follows:
4-year term
- Cathy Evanochko, Co-Chair
- Melissa Cote
2-year term
- Karen Shulist, Co-Chair
- Ray Marco, Secretary
- Jennifer Flinn, Director
We would like to thank Patricia Nolan for her years of dedication as a director with TSCST, we wish her nothing but the best moving forward.
TSC Patient meeting with Dr. Anil Kapoor, Hamilton
Dr. Anil Kapoor, Director of the Hamilton/Niagara TSC Program and Professor of Surgery (Urology) at McMaster University is hosting a TSC Patient meeting. All families and caregivers are encouraged to attend. You will have the opportunity to hear Dr. Kapoor speak on TSC related issues and to meet and network with others.
Date/Time: TBD. Meeting to be rescheduled
Location: Juravinski Cancer Centre Lecture Theatre, 4th Floor Juravinski Cancer Centre at Hamilton Health Sciences building, 699 Concession Street Hamilton, Ontario
TAND (TSC Associated Neuropsychiatric Disorders)
TSC is associated with a wide range of cognitive, behavioral and psychiatric manifestations which can be quite concerning to individuals and their families. TAND (TSC Associated Neuropsychiatric Disorders) is a new terminology to describe these manifestations. An introduction to TSC associated neuropsychiatric disorders (TAND) and the TAND checklist are now available online! Access and download the document here:
May is TSC Awareness Month
The month of May is Tuberous Sclerosis Complex (TSC) awareness month in Canada, and May 15th is TSC Global Awareness Day. During this time, the goal is to increase public awareness about this genetic disorder that causes tumours.
Please help to raise awareness alongside us.
