Provider Resources

Navigating an HHT diagnosis doesn’t have to be difficult. Our comprehensive resource library offers

a breadth of information and resources sorted by topic area.

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Resources addressing anemia/iron deficiency including causes, symptoms, and treatment options.

Anemia/ Iron Deficiency

Resources addressing HHT-related issues that affect the brain including cerebral AVMs, hemorrhage stroke, ischemic stroke, brain abscess, migraines and seizures. This section will include screening recommendations and treatment options.

Brain

Resources to guide physicians initiating screening and treatment in patients. Included are handouts and factsheets to provide to patients and families.

Clinicians First Time Seeing a Patient with HHT

Resources related to COVID-19.

COVID-19

Drugs are approved in the U.S. by the Food and Drug Administration (FDA) for specific purposes to help guide medical practice.

Drug Therapy

Resources addressing the treatment of GI bleeding and the screening and treatment for patients with juvenile polyposis associated with the SMAD4 gene.

Gastrointestinal

Resources regarding the HHT-associated genes and how to facilitate genetic testing and counseling for patients and families.

Genetics

Resources addressing the treatment of HHT-related issues that affect the heart including heart failure and pulmonary hypertension.

Heart

Resources addressing the different screening and treatment needs in children.

HHT in children

Resources to guide physicians through common insurance issues including coverage, out-of-network considerations, authorizations, and disability.

Insurance

A comprehensive document outlining screening, treatment and management as determined by an international consensus from HHT experts worldwide. These guidelines were published by the Journal of Medical Genetics in 2009 and are utilized by providers at the HHT Centers of Excellence.

International Guidelines for Screening and Treatment

Resources addressing the treatment of HHT-related issues that affect the liver including liver AVMs, liver failure, and liver transplantation.

Liver

Resources addressing HHT-related issues that affect the lungs including pulmonary AVMs, pulmonary hypertension and brain abscess caused by lung involvement. This section will include screening recommendations and treatment options.

Lungs

Resources to guide physicians in the management of epistaxis.

Nosebleeds or Epistaxis

Resources addressing HHT-related issues in women including pregnancy, menopause, and birth control.

Pregnancy & Women's Issues

Resources addressing skin telangiectasias and treatment options.

Skin

Links to outside medical and government organizations that provide information useful for HHT providers.

Useful Links to Outside Organizations