Welcome to the website of the
Hereditary TTP Registry
Hereditary Thrombotic Thrombocytopenic Purpura (hTTP) or Upshaw-Schulman Syndrome (USS) is an ultra-rare and complex blood coagulation disease
read more about hereditary TTP
At present, the Hereditary TTP Registry has enrolled 231 participants from 18 different countries
click here to know which sites are involved
«The fact that the medical research of a son of the Mississippi Delta, born in Louise, MS in 1929, is being continued by a team of researchers all over the world, still excites me!»

Cristie Upshaw Travis
Daughter of Dr. Jefferson D. Upshaw
The Hereditary TTP Registry participated in the first-in-human study evaluating a recombinant human ADAMTS13 as therapeutic option in the treatment of congenital TTP
click here to read more about the study

Extensive data collection with our collaborators for the Registry in Warsaw Poland

13 August 2019

Site visit at the Institute of Hematology and Transfusion in Warsaw on 23-25.07.2019 (from left: Prof. J. Windyga, Dr. Katarzyna Yalowiec, Mrs I. Aebi, Dr. E. Tarasco and Dr. M. Górska-Kosicka)

Erika Tarasco, Isabella Aebi-Huber and Katarzyna Yalowiec travelled to Warsaw on 23-25^th of July 2019 to help in collecting data for the yearly follow-up and recruiting new hereditary TTP patients to join the Registry.

We thank Prof. J. Windyga and Dr. M. Górska-Kosicka for their collaboration.

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