Canadian TTP Action Group

Recently, the Canadian health care evaluation bodies (CADTH and INESSS) have both recommended not to reimburse for the use of caplacizumab in the treatment of adults with TTP.

Answering TTP Foundation is seeking motivated and self-directed volunteers to develop a strategy and plan of action to address the use of caplacizumab in Canada. No experience is necessary. There exists other charities, and coalitions of rare-disease patient groups that will provide guidance and mentorship.

Sydney started the Foundation to fund TTP research and provide education and patient support. Her Toronto based network of friends and family have successfully implemented this model. We are now calling out for another champion. Another individual or group (patient or supporter) who can step up and build out a much needed framework to engage with decision makers to ensure that patients in Canada can access new effective treatments for TTP.

"Our community requires self-motivated individuals to take on this vital new role. Current volunteers are already overburdened with running existing programs and meeting charity requirements." --- Sydney Kodatsky, Chair, Answering TTP Foundation.

If you are ready to seize this opportunity to give back, and to truly partner in helping the TTP Community, please attend our first Canadian TTP Action Group video call on Wednesday October 14 at 8pm (EDT). Mark your calendars now. Zoom call-in details sent to the TTP Community (click here).