Research
Build multicenter studies, registries, biobanks and investigator collaborations that make rare-disease research possible.
Explore research →About USTMA
Research, advocacy and community—built together.
The United States Thrombotic Microangiopathy Alliance brings patients, families, clinicians and researchers into one national community working to improve the future of people affected by TMA.
Progress through collaboration.Patients, clinicians and researchers working toward the same goal.
Our mission
To promote research that gives hope and provides a better future for everyone who is directly or indirectly affected by TMA conditions.
Where we began
A grassroots research network became a broader alliance.
The USTMA Consortium was formed in 2014 by Drs. Marshall Mazepa and Spero Cataland as a grassroots effort to organize collaborative research in thrombotic microangiopathies.
USTMA has since grown beyond a research consortium into an alliance connecting scientific collaboration with patient advocacy, education, support programs, rapid diagnostic resources and a national TMA community.
What we do
One organization. Four connected roles.
Connect
Bring together patients, caregivers, clinicians, investigators, centers and partner organizations across the TMA community.
Explore the network →Educate
Turn complex TMA science and clinical information into practical resources for patients, families and healthcare professionals.
Patient resources →Advocate
Elevate patient priorities, improve awareness and help ensure that research and care reflect the needs of the people affected.
Get involved →The USTMA model
The Alliance and Consortium strengthen each other.
The Alliance centers patients, families, education, advocacy, support and community.
The Consortium connects investigators, referral centers, research infrastructure and multicenter scientific collaboration.
The value is in the connection between the two: research questions can be informed by lived experience, and discoveries can move back into education, care and future studies.
AlliancePatients · families · advocacy · education
USTMA
ConsortiumInvestigators · centers · studies · data
Collaboration in action
Infrastructure that turns a rare disease community into a research network.
P200 registry snapshot
Research powered by a connected TMA community.
P200 brings longitudinal clinical information together across the USTMA network so investigators can ask better questions and build better studies.
323Participants enrolled
353Acute iTTP episodes captured
19Participating centers
276Participants with ADAMTS13 data
Current snapshot from the supplied USTMA-P200 registry dashboard.Aggregated, de-identified data. Counts may be suppressed when needed to protect participant confidentiality.
Community is part of the infrastructure
Rare disease progress requires more than a database.
USTMA creates places where people can ask questions, share experience, find experts, participate in research and build relationships that last beyond a single study or meeting.
Be part of what comes next
Better TMA research happens when the whole community is involved.
Whether you are living with TMA, caring for someone, treating patients, conducting research or supporting the mission, there is a place to participate.