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!
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 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.
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.
Medscape, a well known global online platform for the medical community, has added a new CME (Continuing Medical Education) accredited activity to increase knowledge about the treatment of immune-mediated thrombotic thrombocytopenic purpura (iTTP) entitled "Advances in iTTP: How Can New Therapeutic Options Improve Patient Care?" .
Due to the COVID-19 pandemic, the 2020 Answering TTP research grant competition deadline has been extended at least two months, until June 1, 2020. As the situation continues to evolve we will consider further extensions. Take care.