Answering TTP

Plasma exchange treatment for TTP is frightening, risky and unpredictable. Patient quote: “When having an episode, the biggest fear is that perhaps the treatment won't work - the risk of heart attack, stroke or death is very real.”

Patient quote on plasma exchange: “It is a HUGE deal! Even with solvent-detergent plasma, the chance of reaction is still high, and one worries what might happen with each treatment. In our case, there were many side effects and rarely was there a 'straight-forward' session.”

Patient quote on plasma exchange: “I cannot underscore enough that plasma exchange is a huge deal. Being hospitalized for weeks away from family, and having your entire blood volume passed through a machine and fed back to you combined with strangers’ blood is mind boggling."

If you’re living with TTP, we’d love to hear from you! Researchers are looking at TTP patients’ experiences with healthcare to understand if differences in access to care after a TTP diagnosis impact outcomes. Please consider taking this anonymous survey: redcap.link/TTPstudy

LAST DAY TO COMPLETE THE PATIENT SURVEY! Thank you to those who have submitted your stories in hopes of making caplacizumab accessible in the future for those in need. If you or someone you know has a story to share, please do so today. Survey Link -> shorturl.at/bwGY6

DEADLINE EXTENDED TO June 8th, 2022! With caplacizumab being reviewed again by CADTH, we are seeking Canadian TTP patients and their caregivers to share their experiences to prevent CADTH from getting a second negative recommendation. Share your story: shorturl.at/bwGY6

We are excited that caplacizumab (Cablivi) will be reviewed again by CADTH and need your help! There are only 3 days left for Canadian TTP patients and their caregivers to fill out the survey. Help us make Cablivi accessible for those in need! Survey Link: shorturl.at/bwGY6

5 Days Left! There’s still time to help make caplacizumab (Cablivi) more accessible to patients in need! If you’re a Canadian TTP patient, or a caregiver of a TTP patient, fill out the survey to help CADTH in their secondary review! Survey Link -> shorturl.at/bwGY6

Calling all #TTPpatients and #caregivers of TTP patients! #CADTH has announced the patient input window is open for the second review of #Caplacizumab. Please take this survey to help ensure patients can access this drug in the future! shorturl.at/bwGY6 #resubmission #ttp

Bruce Morton, a proud member of #AnsweringTTP shared his story living with TTP with @healthing_ca! We encourage everyone to share the article so more Canadians become aware of this rare disease. Article -> tinyurl.com/2p87dxar #ttp #raredisease #patientstory

Canada is an outlier when it comes to coverage and reimbursement for Caplacizumab, a drug that can save the lives of TTP patients. Visit (answeringttp.org) to learn how you can help TTP patients receive access to treatment! #ttp #raredisease #caplacizumab #reimbursement

Interested in more ways to get involved? Want to make an impact for the TTP community? Here are two ways you can leave a lasting impact! #ttp #raredisease #volunteer #nonprofit

"The rare disease community is small and we need all the help we can get! Here are a few more ways to become involved- including sharing your own experience! Visit answeringttp.org for more information!" #ttp #raredisease #volunteer #nonprofit

On #RareDiseaseDay one of our proud members Claudia shared her story about how #TTP impacted her daughter and changed their lives forever. We thank @TorontoStar for publishing the story and putting a spotlight on this rare blood disorder! Article -> tinyurl.com/bde4f334

We are always in need of more helping hands! Visit answeringttp.org for more information on how to get involved! #ttp #raredisease #volunteer

Today is #rarediseaseday! Visit our website (link: answeringttp.org) to read patient stories, learn about our past advocacy efforts, and how you can support us! #ttp #raredisease

The struggle of living with TTP does not end after receiving treatment- patients live with a range of severe complications post treatment, impacting their lives forever. #ttp #raredisease

TTP has an extremely high mortality rate if left untreated. TTP patients face a constant fear of experiencing a relapse and not being able to receive the immediate treatment they need. #ttp #raredisease

As we approach #rarediseaseday we want to highlight the struggles and the continued danger for patients in a TTP crisis. #ttp #raredisease

@JessicaBellTO @celliottability @andrewjlbryant Thank you @JessicaBellTO for your continued support, and we look forward to hearing from @celliottability! #TTP patients deserve access to life-saving treatment in #Ontario and across #Canada

Today I handed MOH @celliottability letters sharing the painful impact #aTTP has on UniRose families, and how timely access to treatment is a matter of life or death for their loved ones. Thank you for meeting with me @_kristinabryant, @andrewjlbryant, David & Barb Firman.