The United States Thrombotic Microangiopathy (USTMA) Consortium was formed in 2014 as a collaborative initiative to organize research efforts in the thrombotic microangiopathies (TMAs). Atypical HUS is often known as Complement Mediated TMA or cm-TMA. While its research and studies include international collaborations, the USTMA has 15 study and clinical centers within the United States and among them are the Cleveland Clinic, John Hopkins, and the Mayo Clinic.
A natural fit with USTMA’s focus on atypical and TTP clinical and research areas, they hosted an in-person meeting Sept 29th through Oct 1st 2023 in Durham NC for TTP and aHUS patients and family caregivers. In addition to presentations from medical personnel on topics of the latest advancements in TTP and aHUS treatment and therapies, patient organizations were invited to participate. (Agenda: www.ustma.org/2023agenda ) An array of clinical presentations by USTMA expert clinician researchers can be seen on their YouTube Channel, as well as direct links to aHUS videos offered below.
The aHUS Alliance Global Action team was invited to create video presentations which would share information about patient experiences, as well as needs and concerns of aHUS families. Materials created by the aHUS Alliance Global Action team were distributed at the Durham event, to include the latest edition of the aHUS Fact Sheet 2023-Sept-2024 and a ‘quick reference’ sheet of QR Codes to key resources.
USTMA’s event integrated patient voices, to include insights offered by aHUS volunteer advocates via the videos created by Taylor Coffman, Jeff Schmidt, and Linda Burke. Taylor Coffman’s experiences with pregnancy triggered aHUS centered her video presentation, and she’s an active advocate on Substack: Rare Disease Girl. Jeff Schmidt’s video presentation focused on the importance of connecting with others for support, a central part of his continued leadership in creation for our aHUS global patients video projects, most recently for aHUS Awareness Day 2023. As a Trustee of aHUS Alliance Global Action and a founding member of the international aHUS Community Advisory Board, Linda Burke provided an overview of key issues facing aHUS patients and family caregivers as well as advocacy efforts which address them. Direct links to their videos are noted below.
aHUS Advocates: Recent Presentations (videos)
Taylor Coffman 2023 USTMA Patient Meeting: Journey with Pregnancy-Triggered aHUS (8:23)
Jeff Schmidt 2023 USTMA Patient Meeting: Connecting aHUS Families for Support (4:10)
Linda Burke 2023 USTMA Patient Meeting: Advocacy & Initiatives for aHUS Alliance Global Action (18:24) Sharable link at https://bit.ly/aHUSadvocacyOverview2023
USTMA Clinical Presentations: 2023 (videos)
2023 USTMA Patient Meeting: Vaccines and Rare Diseases Dr. Camila Masias and Dr Senthil Sukumar discuss the guidance on vaccines for rare disease patients (23:59)
2023 USTMA Patient Meeting: Advocacy Initiatives. Topics included their Fast4TMA collaboration with Machaon Diagnostics, also the AOFAC Foundation and Ree Wynn Foundation (TTP). (45:3)
Other USMA Presentations (videos)
ASN 2023 USTMA Panel: Pregnancy induced TMA. Dr. Anuja Java, with Dr. Ana Antun & Dr. Richard Burwick
USTMA 2022: Webinar on Thrombotic Microangiopathies The Role of Multidisciplinary Teams in the Diagnosis of Patients with Thrombotic Microangiopathy (49:23, with Transcript available) Dr Shruti Chaturvedi. First in a series: Episode on diagnosis during the initial 72 hrs with patient hospitalization.
2022 USTMA Patient Meeting: CM-TMA Updates in Treatment. Dr. Anuja Java (31:07)
2022 USTMA Patient Meeting: CM-TMA updates in Treatment, a Q&A Discussion. Dr. Anuja Java & Dr. Spero Cataland (28:50)
USTMA & Machaon Diagnostics: Fast 4 TMA (article)
Fast 4 TMA: USTMA Partnership with Machaon Diagnostics, our article on a program to improve diagnosis via an innovative ADAMTS13 testing program.
See other USTMA videos on topics such as:
Women & TMA, Ask the Doctor and More
