USTMA Alliance and Consortium (@USTMAConsortium) profile picture

The mission the USTMA Consortium is to improve outcomes in through observational studies, clinical trials of novel therapies and translational research.

Joined May 2018
Photo by USTMA Alliance and Consortium (@USTMAConsortium)Photo by USTMA Alliance and Consortium (@USTMAConsortium)Photo by USTMA Alliance and Consortium (@USTMAConsortium)Photo by USTMA Alliance and Consortium (@USTMAConsortium)Photo by USTMA Alliance and Consortium (@USTMAConsortium)Photo by USTMA Alliance and Consortium (@USTMAConsortium)Photo by USTMA Alliance and Consortium (@USTMAConsortium)Photo by USTMA Alliance and Consortium (@USTMAConsortium)Photo by USTMA Alliance and Consortium (@USTMAConsortium)Photo by USTMA Alliance and Consortium (@USTMAConsortium)
Earlier this month I had the honor of presenting our data from the FAST4TMA program during the 2023 American Society of Hematology conference. Thank you to everyone who makes this possible.
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USTMA Alliance and Consortium retweeted
The groundbreaking initiative, called FAST4TMA, will be launched for patients across the U.S. on June 24, 2023. GROVEPORT, OHIO, UNITED STATES, June 23, 2023/EINPresswire.com/ -- The United States Thrombotic Microangiopathies Alliance (USTMA) news-abc.com/culture/ustma-m…
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USTMA.org/fast4tma Incredible new program! Free rapid ADAMTS13 testing, both inpatients and outpatients, for FREE!
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USTMA Alliance and Consortium retweeted
Time to focus on survivorship in #TTP. 🧠 Silent cerebral infarcts (MRI ischemia but no overt stroke) are common and associated with major cognitive impairment. 🎯 targeting vascular risk factors and ADAMTS13 may help @USTMAConsortium @ReeWynn @TTPFoundation
Replying to @DocsDock200
We mostly focus on the acute disease and manage with plasma exchange, rituximab and caplacizumab but new research from @BloodClotDoc teaches us that TTP pts continue to have silent and symptomatic cerebral infants even in remisssion. @ASH_hematology @HopkinsHeme
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USTMA Alliance and Consortium retweeted
Replying to @USTMAConsortium
@USTMAConsortium patient meeting coming soon!!! Don’t miss this opportunity to meet the experts & connect with others. Register now!! ustma.org/so/f1OVnlJJc?langu…
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USTMA Alliance and Consortium retweeted
Heartening experience talking to a whole group of patients and caregivers about #complement & #genetics in #aHUS “Medical education at its best begins with the patient, continues with the patient, and ends with the patient.”  @aHUSAllianceAct @AtypicalHUS
Happening now at the aHUS Foundation Family Conference - @anuja_java speaks on #Genetics and #aHUS. From the 3 pathways of #complement activation to describing why #mutations & cofactor activity matter in atypical HUS patient care.
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USTMA Alliance and Consortium retweeted
Such a pleasure and privilege to meet with a fantastic group of #rare patients and #caregivers. @USTMAConsortium @HopkinsHeme
Atypical HUS in #Pregnancy with @BloodClotDoc A topic of keen interest to #aHUS families, atypical HUS is difficult to diagnose apart other conditions which present with similar clinical profile. #HELLP #preclampsia #TMA Key that #ADAMTS13 results can assist diagnosis
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📣 Don't miss the upcoming episode of Advancements with Ted Danson on Sat, Apr 15 at 8pm ET! Learn about thrombotic microangiopathy (TMA) and the latest research efforts to improve outcomes for patients. Hear from experts at USTMA and gain valuable insights into microthrombi
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I wanted to let you know about an exciting event coming up on April 15th - the United States Thrombotic Microangiopathy Alliance and Consortium (USTMA) will be featured on the Advancements with Ted Danson show on Bloomberg TV!
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So mark your calendars for April 15th and tune in to Bloomberg TV to learn more about the amazing work being done by USTMA. You won't want to miss it! advancementstv.com/ #USTMA #thromboticmicroangiopathy #advancementswithteddanson #bloombergtv
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USTMA Alliance and Consortium retweeted
After listening to the #NephMadness PodCrawl, I have decided to pick Secondary TMA to pull the upset over Primary TMA This was an easy choice. The committee included Preeclampsia, HELLP, and Pregnancy-associated aHUS in this group. Do not eliminate pregnancy TMA in 1st round!
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USTMA Alliance and Consortium retweeted
Immune thrombotic thrombocytopenic purpura: Spotlight on long-term outcomes and survivorship frontiersin.org/articles/10.… @USTMAConsortium @TTPFoundation
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Happy Rare Disease Day! Let's take a moment to recognize the millions of individuals around the world who are affected by rare diseases, including thrombotic microangiopathy (TMA). Despite its rarity, TMA can have a devastating impact on those affected by it.
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Let's raise awareness and support research efforts to find better treatments and cures. #RareDiseaseDay #TMA #ShowYourRare
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USTMA Alliance and Consortium retweeted
Strategies to optimize long term #iTTP outcomes highlighted in our new review. tinyurl.com/yr4ryehu #TTP #survivorship #RareDisease @TTPFoundation @USTMAConsortium @TTP_Network @SSukumarMD
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Are you a woman who has had TTP? Researchers are interested in your experiences with care after TTP, especially regarding pregnancy (or deciding whether you want to or should get pregnant). Please take a few minutes to share your perspective with this in this research survey.
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redcap.link/TTPwomen This study was approved by the Johns Hopkins University institutional review board (IRB00289331).
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This month is meant to bring awareness to the impact of Rare Disease. Thrombotic Microangiopathies, such as TTP or aHUS, are not only rare but have lasting impact. Please share with us how you will acknowledge this month!
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