Clinicians First Time Seeing a Patient with HHT
Resources to guide physicians initiating screening and treatment in patients. Included are handouts and factsheets to provide to patients and families.
Related Resources
Rare Coagulation Disorders Resource Room – HHT
Scientific Literature – 2020Rare Bleeding Disorders – HHT Overview.
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…
MoreDiagnosis and Procedure Codes for HHT
Guidelines – 2017Diagnosis and procedure codes are important for insurance processing, but they also help determine a more accurate prevalence of the disease. Make sure your medical records are accurate (CPT, ICD-9 & ICD-10).
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…
MoreAbstracts – 12th HHT International Scientific Conference (2017)
Scientific Literature – 2017Angiogenesis. This article can be purchased directly from the publisher. Click to view the article description and purchase options.
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…
MoreLiving with HHT
Fact Sheet – 2016Living 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.
MoreHHT Facts at a Glance
Fact Sheet – 2016The 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.
MoreDiagnosis and Misdiagnosis of HHT
Fact Sheet – 2016HHT 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…
MoreHHT & Depression
Fact Sheet – 2016The stress of living with a genetic disease can lead to depression. Learn how to recognize the signs and symptoms.
MoreAdvice For People Newly Diagnosed With HHT
Fact Sheet – 2016You’ve just been diagnosed with HHT, now what? This fact sheet will help guide you through your recent diagnosis.
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A Monumental $128 Million Step Forward for HHT Research
Today is a monumental day for HHT. The new biotechnology company, Diagonal Therapeutics, officially launched and we wanted to share more about why this is news you simply can’t miss! In short, Diagona…