Presentation will raise critical awareness of HHT among hematologists, expanding understanding and earlier recognition of this underdiagnosed genetic disease
MONKTON, Md., Oct. 20, 2025 /PRNewswire-PRWeb/ -- Cure HHT, the only organization in the world solely dedicated to finding a cure for hereditary hemorrhagic telangiectasia (HHT) and improving the lives of those affected, today announced that an abstract spearheaded by leaders within HHT Centers of Excellence across the United States and derived from the Comprehensive HHT Outcomes Registry of the United States (CHORUS) has been selected for an oral presentation at the American Society of Hematology (ASH) Annual Meeting this December in Orlando, Florida. The milestone marks the first national presentation from CHORUS and represents a major step forward in expanding recognition of HHT within the hematology community, an important achievement for a disease that remains underdiagnosed and often misunderstood by healthcare professionals.
HHT is a rare, inherited vascular disease affecting approximately one in 5,000 people, and is the second most common inherited bleeding disorder worldwide with a prevalence twice that of hemophilia. It is also the most clinically significant inherited bleeding disorder of women. It can lead to frequent, severe, life-altering and employment-limiting nosebleeds, chronic gastrointestinal bleeding, severe iron deficiency anemia that may cause dependence on intravenous iron and blood transfusions, and arteriovenous malformations (AVMs) in vital organs including the lungs, liver, and brain. AVMs in these organs can cause severe complications or death through brain or lung hemorrhage as well as chronic liver and cardiopulmonary disease. Early diagnosis and access to specialized care are essential to preventing life-threatening complications, yet as many as 80 percent of those affected remain undiagnosed. Greater awareness among hematologists, who are relied upon as the medical home for patients with HHT as they treat the bleeding manifestations and severe recurring iron deficiency anemia of HHT—the most common and most pervasive clinical manifestations—is essential. Timely recognition and expert care can prevent tragedies, save lives, and dramatically improve outcomes for individuals and families living with HHT.
CHORUS was launched in 2023 through federal funding secured after more than 15 years of Cure HHT's advocacy efforts, culminating in HHT's inclusion as a line item in the federal spending bill that established the National HHT Diagnosis and Treatment Initiative. This landmark victory marked the first time HHT received direct federal support, placing it alongside other recognized severe inherited hematological disorders such as sickle cell disease and hemophilia. The funding strengthened existing HHT Centers of Excellence, expanded access to multidisciplinary care, and laid the groundwork for CHORUS, a multi-center registry capturing real-world HHT data to improve outcomes and accelerate the search for new therapies.
"Being featured on the ASH oral platform is a major signal to hematologists everywhere," said Marianne Clancy, MPA, Chief Executive Officer of Cure HHT. "CHORUS was created to accelerate answers for people living with HHT. Our tireless advocacy efforts helped us secure the federal investment to stand it up, and our community's participation is already driving insights that can improve care now and unlock therapies next."
"This first CHORUS analysis shows the power of coordinated data from expert centers," added Dr. Hanny Al-Samkari, MD, the Peggy S. Blitz Endowed Chair in Hematology/Oncology at the Massachusetts General Hospital and an Associate Professor of Medicine at Harvard Medical School, and Co-Director of the HHT Center of Excellence at Massachusetts General Hospital. "HHT has, for too long, been overlooked and underrecognized within the medical community. CHORUS is helping us change that by giving us new insights into how this disease manifests across patients and allowing us to use that data to improve care, refine treatment strategies, and design smarter, disease-modifying clinical trials."
The oral presentation, "Clinical spectrum of hereditary hemorrhagic telangiectasia (HHT): Data from the Comprehensive HHT Outcomes Registry of the United States (CHORUS)," highlights numerous novel and impactful findings from the registry's first multi-center analysis. For hematologists, the findings serve as a call to action to improve early diagnosis, adequate prevention and management of bleeding and anemia manifestations, including life-threatening intracerebral hemorrhage. For the patient community, it demonstrates how years of advocacy can translate into science, awareness, and change. The presentation will be delivered at ASH on Saturday, December 6, 2025. Cure HHT encourages hematologists, researchers, and clinicians attending the meeting to join the session and connect with CHORUS investigators to learn more about this groundbreaking work.
HHT and Cure HHT will have a notable presence at ASH. On Friday, December 5, 2025, Cure HHT will co-sponsor the HHT Friday Satellite Symposia: Advances in Targeting Angiogenesis and Managing Severe Anemia in Vascular Bleeding Disorders: Hereditary Hemorrhagic Telangiectasia and Beyond (8:00–10:00 a.m. ET, OCCC Room W224ABEF). The session will feature international experts—including Dr. Al-Samkari, Dr. Magdalena Lewandowska, Dr. Allyson Pishko, and Dr. Jenny Zhou—discussing new antiangiogenic therapies, management of severe iron deficiency anemia, and emerging strategies improving patient outcomes. Later that evening, Cure HHT will host an informal research reception (7:00–9:00 p.m. ET, Tru by Hilton Convention Center, Lime Room) to bring together clinicians, investigators, and advocates for informal discussion and networking around the latest advances in HHT care.
Cure HHT's efforts to educate providers—through initiatives like CHORUS and its Centers of Excellence network—continue to shorten the path to recognition and treatment for thousands of families worldwide.
About Cure HHT
Cure HHT is the only organization solely dedicated to finding a cure for HHT and improving the lives of those affected. For more than three decades, the organization has advanced research, built clinical infrastructure, advocated for federal investment, and connected patients with expert care through a global network of HHT Centers of Excellence. Cure HHT serves as a catalyst for innovation, collaboration, and hope across the HHT community.
Media Contact
Riley Blevins, Senior Director of Community Engagement
[email protected] | 410-357-9932
Media Contact
Riley Blevins, Cure HHT, 1 410-357-9932, [email protected], curehht.org
SOURCE Cure HHT
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