Hereditary Thrombotic Thrombocytopenic Purpura (hTTP)

The Hereditary Thrombotic Thrombocytopenic Purpura Registry is the biggest worldwide Registry for patients with hereditary/congenital thrombotic thrombocytopenic purpura (hTTP), also known as Upshaw-Schulman syndrome.

Our main goal is to collect data about hTTP from as many patients and their relatives as possible. This helps us in better understanding the manifestations and the unmet needs of these patients associated with such rare disease.

If you have any questions about hereditary TTP, the Registry or our research activities, or if you care for a patient with a potential diagnosis of hTTP, or want to discuss an hTTP case, please contact us at support@ttpregistry.net.

News

09 November 2023 FDA Approves First Treatment for Patients with hTTP

Today, the U.S. Food and Drug Administration approved Adzynma, the first recombinant (genetically engineered) protein product indicated for prophylactic (preventive) or on demand enzyme replacement...

11 January 2023 Takeda: TAK-755 shows positive Phase 3 data in patients with cTTP

Takeda Announces Favorable Phase 3 Safety and Efficacy Results of TAK-755 as Compared to Standard of Care in Congenital Thrombotic Thrombocytopenic Purpura (cTTP)

22 August 2022 Tired of reading: listen to a podcast

Podcast about strokes in hTTP from Azra's article in Blood

22 August 2022 Strokes in hTTP: don't miss this importat article by our colleague Azra Borogovac

Azra Borogovac published her work about neuropsychiatric symptoms and strokes in hTTP Patients in Blood.
To read the full article, click here.

08 April 2022 Monica Schaller won the poster price at GTH 2022

Monica presented the winning poster entitled "Substantial differences in the immune response to ADAMTS13 in immunemediated and in plasma-treated hereditary Thrombotic Thrombocytopenic Purpura (TTP)"...

08 April 2022 Johanna Kremer won the Alexander Schmidt Preis 2022

The highest and prestigious award of the Society of Thrombosis and Hemostatis (GTH), the Alexander Schmidt Preis 2022 was awarded to Prof. Johanna Kremer due to her devotion and work in the filed of...