HHT
Research
News & Resources
Who We Are
Guidelines
Get Involved
Ways to Donate

Contact Us
Join Us
Cure HHT Canada
Research Hub
Donate

HHT
Research
News & Resources
Who We Are
Guidelines
Get Involved
Ways to Donate

Newly Diagnosed

Resources to guide newly diagnosed patients through initiating screening and treatment locally and at HHT Centers of Excellence.

Patient Topics

Anemia/ Iron Deficiency
Brain
Drug Therapy
Gastrointestinal
Genetics
Heart
HHT in children
Insurance
Liver
Lungs
Mental Health
Newly Diagnosed
Nosebleeds
Pregnancy & Women’s Issues
Skin
Useful Links to Outside Organizations

Advanced Search

Filter by Resource Type

Related Resources

Knowledge is Power: The 5 Biggest Changes in HHT Care (Recording)

Webinar – 2026

Our understanding of HHT is constantly evolving. If you haven’t been to a conference in a few years, or it’s been a while since you were last seen at an HHT Center of Excellence – this session is a must. In this Cure HHT webinar recording, we walk th…

Comprehensive Guide to Managing Your Nosebleeds (Recording)

Webinar – 2026

If you live with hereditary hemorrhagic telangiectasia (HHT), you already know nosebleeds (epistaxis) aren’t “just annoying”—they can disrupt daily life, drive anxiety, and in some cases lead to serious complications. In this Cure HHT webinar recordi…

Mi CHECKLIST Sobre HHT Cuidados: Diagnóstico

Español, Patient Tool – 2024

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…

Imágenes Diagnósticas y HHT

Español, Fact Sheet – 2024

Hoja informativa complementaria a los recursos para pacientes de Mi Checklist Sobre HHT Cuidados, y basada en las actualizaciones de las Segundo HHT Internacional Directrices publicadas en Annals of Internal Medicine en 2020.

Diagnóstico de HHT

Español, Fact Sheet – 2024

Hemorragia Gastrointestinal y HHT

Español, Fact Sheet – 2024

Hemorragias Nasales (epistaxis) y HHT

Español, Fact Sheet – 2024

Malformaciones Vasculares Cerebrales y HHT

Español, Fact Sheet – 2024

Anemia, Deficiencia de Hierro y HHT

Español, Fact Sheet – 2024

How to Be an HHT Changemaker Part 1: Drive Research (Recorded)

Webinar – 2024

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…

The Role of Genetics in HHT (for patients)

Brochure – 2023

For people who suspect that they might have HHT, this brochure provides an overview of the signs, symptoms, and genetics of HHT and outlines the importance of getting genetic testing to either confirm or rule out an HHT diagnosis. If you suspect that…

HHT Family Ambassadors & Communicating with Family

Video – 2023

FB Live Event – Join Sara Palmer, PhD, author of Living with HHT, and Riley Blevins of Cure HHT as they navigate discussing HHT with family members and the importance of being a family ambassador during HHT Awareness Month in June. Click image below…

Uncovering Your Roots: Decoding Genetic Testing

Video, Webinar – 2023

Discover the power of genetic testing as we uncover the roots of HHT! Join us for an enlightening online education opportunity with Theodore Drivas, MD, PhD, University of Pennsylvania HHT Center of Excellence, and Genetic Counselor, Zahra Girnary, U…

Research Roundtable: An Inside Look at Exciting Clinical Trials

Webinar – 2023

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…

Nosebleed Management – Nurse Cards

Patient Tool, Provider Tool – 2022

This card contains helpful tips for nosebleed management in a format that is ideal for providers who may not be familiar with the care required for HHT-related nosebleeds. Additionally, the card is available for purchase in our store on durable cards…

Newly Diagnosed

Resources to guide newly diagnosed patients through initiating screening and treatment locally and at HHT Centers of Excellence.

Related News

Town Hall: Cure HHT Centers of Excellence Program Updates