Development and performance of a hereditary hemorrhagic telangiectasia-specific quality-of-life instrument

Blood Advances. Authors: Raj S Kasthuri, Shruti Chaturvedi, Sonia Thomas, Nathan Vandergrift, Carla Bann, Nicole Schaefer, Marianne S Clancy, Reed Pyeritz, and Keith R McCrae. This article is available for public use and does not require purchase. Cl…

A Comprehensive Guide to Managing Your HHT

We’ve taken the International HHT Guidelines and distilled them into easily readable factsheets and checklists that can be filled out and given to your physicians. The result is a beautifully bound and curated 48-page publication, A Comprehensive Gui…

The Rare Genomes Project

The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected rare disease who do not have a genetic diagnosis. The goal of their project is two-fold: (1) pro…

Physician Webinar: The Role of Liver Imaging in HHT (Recorded)

Liver involvement occurs in approximately 75% of people with HHT. While many people are asymptomatic, the complications associated with liver involvement have historically been under diagnosed. These complications include arterioportal shunting leadi…

International HHT Guidelines: Diagnosis

Dr. Justin McWilliams, Co-Director, UCLA HHT Center of Excellence and Katie Wusik, Genetic Counselor for the Cincinnati Children’s Hospital HHT Center of Excellence discuss diagnosing HHT. Dr. McWilliams and Ms. Wusik walk the audience through how a…

HHT Medical Emergency Wallet Card

In the event of an emergency, this printable compact medical card is wallet-sized and can speak for an HHT patient when they can’t. The card features a description of HHT, recommended medical protocols, common HHT related complications, a link for ph…

International HHT Guidelines – Overview (Recorded)

Join Dr. Marie Faughnan, Director, Toronto HHT Centre of Excellence as she provides an overview of the newly updated International HHT Guidelines and how they are used to set the standard of care globally for the diagnosis and treatment of HHT. Dr. F…

WEBINAR: Nociones básicas y generales sobre HHT (en español) (Recorded)

Cure HHT se enorgullece de presentar el primer seminario web en ESPAÑOL. El Dr. Marcelo Serra, especialista en Medicina Interna y Director de la Unidad de HHT del Hospital Italiano de Buenos Aires, brinda una visión general de HHT que es comprensible…

Patient Symptom & Care Checklists

Download and distribute “My HHT Care Checklists” to patients to complete and return to you, including: HHT Care, HHT Diagnosis, Anemia, Brain VMs, Pediatric, Teen Years, Nosebleed, GI Bleeding, Liver VMs, Pregnancy & Delivery, and Pulmonary AVMs….

Physician Fact Sheet

A compact fact sheet that can be hung on your refrigerator or carried with you to a new physician appointment, and shared in the event of an unexpected trip to the emergency room where health care providers may be unfamiliar with HHT. This fact sheet…

Rare Coagulation Disorders Resource Room – HHT

Rare Bleeding Disorders – HHT Overview.

Living with HHT (recorded)

Carrie Fiasco, Licensed Social Worker with the Cincinnati HHT Center of Excellence, explores the effects of HHT on your mental health and family relationships. In addition, learn coping skills that can help you live better with HHT, get tips on how t…

Genetic Testing and HHT

HHT Overview and Screening Guidelines (recorded)

Dr. Mollie Meek, Director at the University of Arkansas Medical Sciences HHT Center of Excellence, provides an introduction to the basic clinical features of HHT for adults and children, including the Curacao diagnostic criteria, general screening pr…

Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia

By Sara Palmer, PhD In this recently published book, psychologist Sara Palmer, who has HHT herself and is an expert in helping people cope with health conditions, draws on current research as she thoroughly describes the symptoms of HHT, explains how…