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Newly Diagnosed

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

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HHT in children
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Related Resources

HHT Overview and Screening Guidelines (recorded)

Webinar – 2018

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

Patient Tool – 2017

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…

My Family Has HHT Pamphlet

Brochure – 2017

Looking 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…

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

Scientific Literature – 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…

Learn More About HHT Brochure

Brochure – 2017

Everything 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…

Ask the Doctor

Webinar – 2017

Dr. 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…

20-year Follow-Up Study of Danish HHT Patients – Survival and Causes of Death

Scientific Literature – 2016

Orphanet 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.

Talking to Your Physician about HHT

Fact Sheet – 2016

It’s important to talk to your doctor about your HHT. Use this fact sheet as a resource when you and your doctor discuss your HHT treatment and management plan.

Living with HHT

Fact Sheet – 2016

Living with HHT can be stressful at times, and most people can manage it. HHT does not have to define your life. Follow these six simple steps and start living life with HHT.

HHT & Depression

Fact Sheet – 2016

The stress of living with a genetic disease can lead to depression. Learn how to recognize the signs and symptoms.

My Partner Has HHT

Fact Sheet – 2016

When your partner or spouse has HHT, you are also affected by the disease. Learn how your partner is affected by HHT, what you can do to help them, how to prepare for parenting and ways to take care of yourself.

Know the Signs & Symptoms of HHT

Fact Sheet – 2016

Recognizing HHT symptoms is half the battle. Knowing the signs and symptoms of HHT can help save a life.

Diagnosis and Misdiagnosis of HHT

Fact Sheet – 2016

HHT signs and symptoms are not recognized and often mistaken for other conditions. Misdiagnosis and delay in diagnosis pose the greatest risk to a person with HHT. Knowing the common misdiagnoses can lead to faster identification of HHT, life-saving…

HHT Facts at a Glance

Fact Sheet – 2016

The most critical HHT information highlighted on a single sheet. HHT Quick Facts provides you and your physician critical information about organs typically involved, symptoms of the disease, need for prophylactic antibiotics and use of IV filters.