Newly Diagnosed
Resources to guide newly diagnosed patients through initiating screening and treatment locally and at HHT Centers of Excellence.
Related Resources
Diagnosis of HHT
Fact Sheet – 2021Companion 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.
MoreHHT International Clinical Guidelines (2020)
Guidelines – 2020Published by the Annals of Internal Medicine in 2020, the “Second International Guidelines for the Diagnosis and Management of HHT” is a comprehensive document to share with your physician. It outlines the screening, treatment and management of HHT a…
MoreMy HHT Diagnosis Checklist
Guidelines, Patient Tool – 2020The “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…
MoreMy HHT Care Checklist
Guidelines, Patient Tool – 2020The “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…
MorePhysician Fact Sheet
Fact Sheet – 2020A 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…
MoreCure HHT Social Media Channels
Patient Tool – 2020Get the lastest information on everything HHT — clinical trials, educational events, regional awareness activities, revised clinical guidelines, COVID-19 updates and so much more. Stay connected with Cure HHT!
MoreLiving with HHT (recorded)
Webinar – 2020Carrie 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…
MoreHHT Overview and Screening Guidelines (recorded)
Webinar – 2018Dr. 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…
MoreLiving with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia
Patient Tool – 2017By 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…
MoreMy Family Has HHT Pamphlet
Brochure – 2017Looking for a simple explanation of HHT to share with your children and those who care for them everyday? This pamphlet is to assist children who may be uncertain or anxious about the symptoms of HHT experienced by themselves and/or their parents. Th…
MoreExecutive Summary – 12th HHT International Scientific Conference (2017)
Scientific Literature – 2017Angiogenesis. 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…
MoreLearn More About HHT Brochure
Brochure – 2017Everything you need to know about HHT all in one place. You can gain a comprehensive understanding of the disease from diagnosis, screening, genetic testing and treatment of the disease. Special attention is given to anemic patients, pregnant women a…
MoreAsk the Doctor
Webinar – 2017Dr. James Gossage, Director of the Pulmonary Vascular Disease program and the HHT Center of Excellence at Augusta University, answers questions about HHT screening, treatment and management. Members of the Cure HHT community submitted a variety of qu…
More20-year Follow-Up Study of Danish HHT Patients – Survival and Causes of Death
Scientific Literature – 2016Orphanet Journal of Rare Diseases. Authors: Anette Kjeldsen, Katrine Saldern Aagaard, Pernille Mathiesen Tørring, Sören Möller and Anders Green. This article is available for public use and does not require purchase. Click to view the full article.
MoreRelated News
HHT Kids Day – San Francisco
Do you live near San Francisco? We have an event for you! HHT Kids Day, co-hosted by UCSF HHT Center of Excellence and Cure HHT at the California Academy of Sciences Museum promises to be an amazing d…