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.
Answering TTP Foundation is excited to learn that Health Canada has approved the use of caplacizumab in combination with plasma exchange and immunosuppression for the treatment of aTTP in adults.
The first Virtual Peer Support session was held on Jan 16, 2020 and was a success! We had a total of eight participants from Canada and the U.S.A., which made for some meaningful time to learn and share from each other. Participants included those diagnosed with TTP (both recently and dating back years) and family members.
Our next session will be help on May 14, 2020. Again, call in details will be circulated about a week prior to the date via Community Annoucement to the Answering TTP Community.