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:

If you would rather take part in the group interview, you can register for your local session here:

PARTNERS Consultation Poster     PARTNERS Consultation Poster_FR

Rare Disease Stategy Possible in Canada


For more information please visit the links below.

Press Conference Video: 

Global and Mail article:

Help support this endeavor and sign the petition:


Events Calendar

Sort Options

Sort By:


10sep - 12All Day2015 International Research Conference on Tuberous Sclerosis Complex: From Treatment to Prevention--Let’s Cure TSC
28febAll DayRare Disease Day
15mayAll DayTSC Global Awareness Day
1junAll DayWorldwide LAM Awareness Day

Social Media