Patient/Family Member/Caregiver Agenda

A warm welcome from Cure HHT. Learn about our organization, current research, and our HHT community.

Introduction to HHT-specific terminology, the basic clinical features of HHT including the Curacao diagnostic criteria, and the differences between a telangiectasia and an AVM. Also, learn about which body systems... Read More

In this session, we will review standards of care, adult screening guidelines from the updated international guidelines, diagnostic tests and frequency of testing for HHT patients. Pediatric screening guidelines will... Read More

Anemia & iron deficiency are the most common manifestations for HHT patients secondarily to nosebleeds. This session will discuss the most effective ways to manage anemia in HHT patients and... Read More

Arteriovenous Malformations (AVMs) represent one of the most important manifestations of HHT. This session will discuss the symptoms and most current therapeutic approaches to AVMs in the brain and lungs.

Iron Matters: Understanding Anemia, Iron Deficiency & GI Bleeding Tangled Web of AVMs

1:30pm-2:00pm HHT Center of Excellence Visit In this session, you’ll learn what to expect when visiting a center of excellence as a new patient and as a returning patient. You’ll... Read More

1:30pm-2:00pm Family Planning Ready to start your family or know who is? In this session, we will go over pre-implantation genetic testing and family planning with HHT.   2:00pm-2:45pm HHT... Read More

Discover how to care for your HHT in coordination with Pulmonary Hypertension. This session will cover a variety of topics that are associated with aging including how liver AVMs can... Read More

The Heart of the Matter & Aging

Join us for some Hors De Oeuvres and Drinks!

It is important to know the basic science behind HHT to understand our current and future research initiatives. Cassi Friday, PhD will present our research roadmap, Raj Kasthuri, MD, MBBS,... Read More

Do you have chronic bleeding for HHT? Learn about your medical and therapeutic treatment options for bleeding. Gastrointestinal (GI) bleeding tends to go untreated and is often misdiagnosed. Learn how... Read More

Learn the medical terminology used by ENTs and the benefits of using the Epistaxis Severity Score (ESS) to evaluate nosebleeds and the effectiveness of treatments. Discover the cutting-edge surgeries now... Read More

Chronic Bleeding Management: Nosebleeds & GI Bleeding Nosebleed Interventions

Advancing the Cure: An HHT Research Update

Cure HHT Staff How to Advocate for your Health