As the Chair and founder of our national Canadian TTP patient group (Answering TTP Foundation), I am writing to seek your interest in joining our first-ever national Canadian TTP Medical Advisory Panel. We appreciate the few minutes you can spare to provide your valued opinion and feedback. Our small and geographically dispersed patient community will benefit from the unique clinical expertise you can share as part of this advisory panel.
As Canada’s only patient-led organization focused on community engagement, education and advocacy for TTP, the Answering TTP Foundation leads a number of important initiatives, including patient support programs and advocacy for access to safe and effective treatments. We are an independently funded organization and work with the local small, but mighty, TTP community to build our grassroots campaigns. To be clear, we have not received funding from pharma in the last two years.
Our vision for this voluntary Medical Advisory Panel would be to seek a small amount of time from TTP treating physicians across Canada. These short virtual round table discussions will improve the lives of those living with TTP. The intention is to structure the group informally, to encourage discussion with real action items that can be customized to the level of support each physician sees fit. The group will have administrative support from the Foundation, but will otherwise be independent. In addition to providing a forum to learn and share with peers, the Foundation may ask the panel to:
- volunteer a panel member to participate in a virtual TTP educational event;
- help our administrator connect TTP patients with TTP treaters, particularly when patients move or experience a crisis while travelling;
- consider endorsing or working toward developing Canadian TTP treatment guidelines; and/or
- lend their independent voice to support access to TTP treatments via clinician opt-in group letter to Ministers of Health and drug plan managers across Canada.
UPDATED ASK - We intend on releasing information about the formation of a Medical Advisory Panel on International TTP Day (September 18). Please click here to send a quick message to firstname.lastname@example.org to let us know if you would be willing to consider joining this panel/attend a virtual introductory session by Friday September 10. Session to be scheduled in October for those interested.
Please contact me with any questions or concerns you might have. I look forward to hearing from you.
Sydney Kodatsky MBA, BSc.
Chair, Answering T.T.P. Foundation
Support the global TTP community in our effort to find answers to this rare and devastating disease.
22 Prince George Dr. | Toronto, ON M9A 1Y1 Canada
Charitable Registration # 84600 4802 RR0001