Patient/Family Member/Caregiver Agenda
Day 1
03 Jun 2023
7:30 am-8:30 am
Evergreen Ballroom Foyer & EF
Welcome
A warm welcome from Cure HHT. Learn about our organization, current research, and our HHT community.
Marianne Clancy, MPA
8:45 am – 9:00 am
Evergreen Ballroom AB
HHT Overview
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. This session will explain the general... Read More
Mark Chesnutt, MD
HHT Screening and Guidelines
In this session, we will review standards of care, screening guidelines, and diagnostic tests and frequency of testing for HHT patients.
Steve Hetts, MD
10:45 am-11:00 am
Evergreen Ballroom Foyer
Genetics: Unraveling your DNA
What is DNA? Learn about the inheritance pattern of HHT, the newly identified HHT genes, the role of genetics on family planning, new genetic testing programs and the impact of... Read More
Katie Wusik, MS, CGC
Tangled Web of AVMs
Arteriovenous Malformations (AVMs) represent one of the most important manifestations of HHT. This session will discuss the symptoms and therapeutic approaches to AVMs in the brain and lungs.
Steve Hetts, MD
Claire Kaufman, MD
12:30 pm-1:30 pm
Evergreen Ballroom EF
Concurrent Session 1: Screening Guidelines & Tangled Web of AVMs; HHT COE Visit
1:30pm – 2:15pm (45 minutes) Q&A Breakout- Screening Guidelines & Tangled Web of AVMs 2:15pm – 3:00pm (45 Minutes) HHT Center of Excellence Visit
Brittany Steed, MA
Claire Kaufman, MD
Mark Chesnutt, MD
Concurrent Session 2: Family Planning, Pregnancy, Pediatrics
Raj Kasthuri, MD, MBBS
Els De Gussem, MD
Katie Wusik, MS, CGC
3:00 pm-3:30 pm
Evergreen Ballroom Foyer
GI Bleeding, Iron Deficiency, and Anemia
Trying to figure out the cause of your anemia? Gastrointestinal(GI) bleeding tends to go untreated and is often misdiagnosed. Learn how to recognize the symptoms related to HHT in the... Read More
Raj Kasthuri, MD, MBBS
The Heart of the Matter and Aging
Discover how to care for your HHT in coordination with other medical conditions. This session will cover a variety of topics that are associated with aging including how liver AVMs... Read More
Kevin Whitehead, MD
Edda Spiekerkoetter, MD
5:00 pm-5:30 pm
Evergreen Ballroom AB
Q&A Panel
GI Bleeding, Anemia, & Iron Deficiency & The Heart of the Matter and Aging
Raj Kasthuri, MD, MBBS
Kevin Whitehead, MD
Edda Spiekerkoetter, MD
5:30 pm-9:30 pm
Evergreen Ballroom EFGHI
Day 2
04 Jun 2023
7:30 am-8:30 am
Evergreen F and Foyer
8:30 am-8:45 am
Evergreen ABCD
8:45 am-9:30 am
Evergreen ABCD
Living with HHT
Explore the effects of HHT on your mental health and family relationships and learn coping skills that can help you live better with HHT. Get tips on how to educate... Read More
Nosebleed Management Panel
-Medical Treatment -Surgical Treatment -Drug Therapy Learn the medical terminology used by ENTs and the benefits of using the Epistaxis Severity Score (ESS) to evaluate nosebleeds and the effectiveness of... Read More
Jeb Justice, MD
Holly Boyer, MD
Bryan McCrae, MD
10:45 am-11:00 am
Evergreen F and Foyer
11:00 am-11:45 am
Evergreen Ballroom AB
Concurrent Session 1: Q&A Breakout -Nosebleeds, Bleeding, Iron/Anemia
Q&A Breakout – Nosebleeds, Bleeding, Iron/Anemia
Jeb Justice, MD
Holly Boyer, MD
Raj Kasthuri, MD, MBBS
Bryan McCrae, MD
Concurrent Session 2: Q&A Breakout – Living with HHT & Aging and HHT
Q&A Breakout – Living with HHT & Aging and HHT
Kevin Whitehead, MD
Katie Wusik, MS, CGC
Edda Spiekerkoetter, MD
11:45 am-12:15 pm
Evergreen F and Foyer
Advancing the Cure: An HHT Research Update
It is important to know the basic science behind HHT to understand our current and future research initiatives. Dr. Hughes will define scientific terms, explain the relationship between basic, clinical,... Read More
Cassi Friday, PhD
Murali Chakinala, MD
Chris Hughes, PhD
1:45 pm-2:05 pm
Evergreen Ballroom AB
Research Presentations
Two researchers will present their research topics to the patients and providers.
2:05 pm-2:20 pm
Evergreen ABCD