News Archive

Support Groups

Virtual Peer Support

By Sydney Kodatsky | Wednesday, October 14, 2020 - 7:23am

Our Virtual Peer Support meeting on Wednesday, October, 7 was a great opportunity to discuss how TTP has impacted our lives.  Everyone got to share their story and ask questions of the group. Participants that have had TTP for a while were able to share helpful information with the more newly diagnosed participants. See you in December!   

USTMA Consortium National Virtual Meeting

By | Sunday, September 6, 2020 - 7:34am

The United States Thrombotic Microangiopathy (USTMA) Consortium patient meeting held virtually on Saturday, August 22, 2020 was extremely informative.  The all day meeting format was set up very well allowing patients to ask questions.  Some excellent information, from experts in the field, was shared about TTP history, research, preventing relapse, the effects on the brain, particular issues for women, etc.  Recordings from the meeting are available on their website here. 

Rare Disease Day 2020

By Sydney Kodatsky | Friday, May 22, 2020 - 7:18am

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. 

ASH FAQs re: COVID-19 and Thrombotic Thrombocytopenic Purpura

By Sydney Kodatsky | Tuesday, April 21, 2020 - 6:49am

The American Society of Hematology (ASH) has posted FAQs regarding new considerations for TTP treatment during the COVID -19 pandemic. This information is available on their website. Input from Drs. Spero Cataland, Paul Coppo, Marie Scully, Masanori Matsumoto, James George, Bernhard Lämmle, Flora Peyvandi, and Ravi Sarode.

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