How to Be an HHT Changemaker Part 1: Drive Research

Participating in research is the ultimate way to be an HHT changemaker. We have two exciting new projects to share with you, HHT Connect and the Cure HHT BioBank. Courtney Kasturiarachi, MPH, walks you through everything you need to know about HHT Co…

Mi CHECKLIST Sobre HHT Cuidados: Embarazo y Parto

Las listas de verificación “Mi HHT” son una serie de listas de verificación por área temática para que las personas con HHT se autogestionen y las lleven a su médico. Estas listas de verificación se basan en el cuidado recomendado en las guías de HHT…

Research Roundtable: An Inside Look at Exciting Clinical Trials

Delve into the exciting clinical research projects underway in HHT! Cassi Friday, PhD will provide an overview of what goes into a clinical trial. Dr. Marie Faughnan (Brain AVM Study), Dr. Keith McCrae (PATH Study), Dr. James Gossage (Pazopanib Trial…

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…

Bedside to Bench: How the HHT Community Drives Research Initiatives (Recorded)

In March 2020, Cure HHT was 1 of 30 organizations selected to participate in the Chan Zuckerberg Initiative (also known as CZI) Rare is One Project. This ambitious project is lifting up the work that patient communities are doing to accelerate resear…

International HHT Guidelines: Pregnancy and Women’s Issues (Recorded)

Dr. Andrea Lausman, Maternal Fetal Medicine Specialist, and Dr. Filomena Meffe, Chief, Department of Obstetrics and Gynecology, at the Toronto HHT Centre of Excellence discuss why pregnant woman with HHT should be assessed for their risk of pregnancy…

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…

Women’s Health, Pregnancy & HHT

Companion factsheet to the My HHT Care Checklists patient resources, and based upon updates from the Second International HHT Guidelines published in the Annals of Internal Medicine in 2020.

My HHT Care Checklist

The “My HHT” checklists are a series of checklists by topic area for people with HHT to self-manage their care and bring to their doctor. These checklists are based on the care recommended in the HHT Guidelines. Start with the “Checklist for My HHT C…

My HHT Pregnancy & Delivery Care Checklist

The “My HHT” checklists are a series of checklists by topic area for people with HHT to self-manage their care and bring to their doctor. These checklists are based on the care recommended in the HHT Guidelines. Start with the “Checklist for My HHT C…

IVF and Preimplantation Genetic Testing for HHT (recorded)

Katie Wusik Healy, LGC, MS, Genetic Counselor at the Cincinnati HHT Center of Excellence, talks about pre-implantation genetic testing (PGT), including what you might consider before pursuing PGT. In addition, options for determining if a child has H…

Pregnancy and HHT

HHT Scientific Conference Summaries (recorded)

  Drs. Hughes, Faughnan and Andrejecsk provide a first hand synopsis of the HHT science presented in Dubrovnik, Croatia where over 200 voices were heard from 23 countries. They reviewed the 12th HHT International Conference Executive Summary of…

Executive Summary – 12th HHT International Scientific Conference (2017)

Angiogenesis. Authors: Jillian W. Andrejecsk, Anna E. Hosman, Luisa M. Botella, Claire L. Shovlin, Helen M. Arthur, Sophie Dupuis-Girod, Elisabetta Buscarini, Christopher C. W. Hughes, Franck Lebrin, Christine L. Mummery, Marco C. Post, and Johannes…

Let’s Get Personal – HHT in Women (recorded)

Dr. Els de Gussem, Director of the HHT Center of Excellence at Grace Hospital AMC in Winnipeg, Canada, takes an in-depth look at the effects of HHT on the changing female body. She discusses the impact of birth control, pregnancy and menopause as wel…