Advocating for Expanded Access to Care: Miller School Leaders Take HHT Awareness to Capitol Hill
University of Miami Miller School of Medicine leaders traveled to Washington, D.C., to advocate for expanded federal support for HHT Centers of Excellence, rare disease research and earlier diagnosis.
Hereditary Hemorrhagic Telangiectasia (HHT) is a rare genetic vascular disorder that can cause frequent nosebleeds, internal bleeding and life‑threatening complications such as stroke or heart failure. Despite its seriousness, the condition remains significantly underdiagnosed, delaying access to specialized care that can dramatically improve outcomes.
Leaders from the University of Miami Miller School of Medicine’s HHT Center of Excellence traveled to Washington, D.C., to meet with members of Florida’s congressional delegation and their staff, advocating for increased federal support for HHT Centers of Excellence around the globe.
The delegation was led by:
• Maria Del Pilar Bayona, M.D., a Miller School professor of interventional radiology and medical director of the UHealth — University of Miami Health System HHT Center of Excellence
• Shannon Lange, UHealth HHT Center of Excellence administrator and manager of operations for interventional radiology at the Miller School
• Ricardo Aleman, senior administrator for the Miller School’s Department of Interventional Radiology
Raising Awareness of a Rare Disease
A central goal of the Capitol Hill visit was to ensure that lawmakers understand both the scope of HHT and the consequences of delayed diagnosis.
“A primary objective of our visit is to increase awareness of HHT among legislators and their staff,” Dr. Bayona said. “Given that HHT is an underdiagnosed rare disease with potentially serious complications, it is critical to ensure that policymakers understand both its clinical impact and the importance of early diagnosis, specialized care and coordinated treatment through Centers of Excellence.”
HHT is caused by abnormal blood vessel formation that creates direct connections between arteries and veins. Without proper screening and management, these malformations can lead to organ damage and other severe outcomes. Early diagnosis and access to multidisciplinary expertise are key to preventing complications and improving quality of life.
Why Centers of Excellence Matter
Cure HHT’s Centers of Excellence provide comprehensive diagnosis, treatment and long‑term management tailored specifically to HHT patients. However, access to these specialized centers remains limited, particularly for patients who must travel long distances for care.
“By increasing awareness, we aim to improve early detection rates, reduce delays in diagnosis and enhance access to specialized care,” Dr. Bayona said. “Greater understanding at the legislative level can also support policies that strengthen rare disease infrastructure, improve patient outcomes and ensure that institutions with demonstrated expertise are supported.”
Currently, Cure HHT has established 28 Centers of Excellence nationwide, with only 16 receiving federal funding. In Florida alone, an estimated 5,300 people are living with HHT, highlighting a significant gap between need and access to care.
Advocating for Research and Life‑Saving Treatments
Beyond awareness, the delegation also emphasized the importance of sustained federal investment in rare disease research and clinical infrastructure.
“We are advocating for sustained and increased federal support for rare disease research, including HHT,” Dr. Bayona said. “Continued investment is essential to advance our understanding of disease mechanisms, develop innovative therapies and expand access to life‑saving interventions such as embolization for pulmonary arteriovenous malformations.”
The team specifically advocated federal grant funding to support Cure HHT’s efforts to expand its national network of Centers of Excellence, bringing specialized care closer to patients and reducing geographic and financial barriers.
Measuring Impact on Capitol Hill
During the visit, the group met with staff from several Florida congressional offices, including representatives for Sen. Ashley Moody and Reps. Mario Díaz‑Balart, Darren Soto and Frederica Wilson.
“Our success is measured by several key indicators, including meaningful engagement with legislators and their staff, increased understanding of HHT and its clinical implications and the establishment of ongoing lines of communication,” Dr. Bayona said. “Longer‑term success will be reflected in legislative support for rare-disease initiatives, inclusion of HHT‑related priorities in policy discussions, and potential collaboration on future advocacy or funding opportunities.”
Timing Advocacy with the Federal Budget Cycle
The advocacy effort comes at a critical moment, as federal budget priorities are actively under discussion.
“Our advocacy aligns with ongoing federal budget discussions, and we aim to ensure that rare diseases such as HHT are appropriately represented,” Dr. Bayona said. “We are seeking to highlight the importance of continued investment in research, clinical care infrastructure and patient support programs during this critical decision‑making period.”
For patients with HHT, expanded federal support could mean earlier diagnosis, improved access to expert care and better long‑term outcomes. For Miller School and UHealth leaders, these meetings represent a critical step in ensuring that rare diseases are not overlooked in national health policy discussions.
With continued collaboration between clinicians, patient advocates and policymakers, efforts like this aim to ensure that no patient is left without access to life‑saving care simply because their disease is rare.
Tags: Department of Interventional Radiology, Dr. Bedros Taslakian, HHT, HHT Center of Excellence, interventional radiology, rare diseases