Patient Resources Whether you are newly diagnosed, a knowledgeable patient or somewhere in between, search our comprehensive resource library for information and resources sorted by topic area. Quick Topic Access 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 Resources addressing the causes, symptoms, and treatment of anemia/iron deficiency. Anemia/ Iron Deficiency Resources for understanding issues that affect the brain in HHT patients including brain AVMs, stroke, brain infections, migraines and seizures. This section will include screening recommendations and treatment options. Brain 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 for understanding and treating issues that affect the digestive tract in HHT patients including GI bleeding and the screening and treatment for juvenile polyposis associated with the SMAD4 gene. Gastrointestinal Resources about the importance of genetic testing and how to obtain genetic testing and counseling for patients and families. Genetics Resources for understanding and treating issues that affect the heart in HHT patients including heart failure and pulmonary hypertension. Heart Resources for understanding the different screening and treatment needs in children. HHT in children Resources to guide patients through common insurance issues including coverage, out-of-network considerations, denials, and disability. Insurance Resources for understanding and treating issues that affect the liver in HHT patients including liver AVMs, liver failure, and liver transplantation. Liver Resources for understanding issues that affect the lungs in HHT patients including lung AVMs and pulmonary hypertension. This section will include screening recommendations and treatment options. Lungs Living with a chronic illness such as HHT can feel isolating, and affect physical and emotional well-being. Mental Health Resources to guide newly diagnosed patients through initiating screening and treatment locally and at HHT Centers of Excellence. Newly Diagnosed Resources addressing the treatment of nosebleeds. Nosebleeds Resources for understanding and treating issues that affect women with HHT including pregnancy, menopause, and birth control. Pregnancy & Women’s Issues Resources for understanding and treating skin telangiectasias (small red spots that disappear when pushed on) and treatment options. Skin Links to outside medical and government organizations that provide information useful for HHT patients. Useful Links to Outside Organizations
