The province of BC has started their review of caplacizumab - our only immediate defence against the potentially life-altering blood clots that characterize a TTP crisis.
Thank you to all those who have registered, and are fundraising for TTP.
It isn't too late. Registration and fundraising continues through the end of October. We are over half way to our fundraising goal!
Thrombotic Thrombocytopenic Purpura is a mouthful! It took me months before it would roll off my tongue (and it sometimes still gets stuck). The good news, is that the name is meaningful even to those medical professionals unfamiliar with this rare and devastating disease.
- Thrombotic - blood clots form in the blood vessels
- Thrombocytopenic - having too few platelets
- Purpura - bruising spots on the skin
As we approach International TTP Day, it is great to see education materials from various sources. Check out the infographic from a pharma (see link below). Raising awareness will save lives. Do your part to spread awareness. Register for International TTP Day now. It is free. Raise funds your way, and be part of this global initiative to fund TTP research.
Shruti Chaturvedi (Associate Professor of Medicine, Division of Hematology, Johns Hopkins University School of Medicine) is conducting an investigation looking at how access to care impacts health disparities in individuals living with TTP.
Our advocacy efforts are being heard. We are very excited to hear that Cablivi (caplacizumab) will be submitted for reconsideration by Sanofi! This resubmission is a critical waypoint on our quest for access. We have work to do to prepare our own submission to decision makers, and we need your help now. Click the survey link below.
A big thank you to those who took part in our winter advocacy campaign.
A Leader in TTP Patient Support
Vicki Nicolls – A loving wife, mother, sister, grandmother and friend.