Making the Connection Between Legislative Advocacy and Federal Funding for HHT (recorded)

Cure HHT Legislative Advisor Mark Vieth takes us for a behind-the-scene look at how Cure HHT can impact federal research funding and awareness of this disease….

HHT Frontlines Scientific Newsletter (2018)

February 2018. Cure HHT’s biannual newsletter that centralizes and summarizes select and important publications about HHT for patients, clinicians, and scientis…

Avastin Indication Table

Table detailing Criteria for IV Bevacizumab (Avastin) Use for Epistaxis and GI Bleeding.   Resource taken from: Iyer, V. N., Apala, D. R., Pannu, B. S., Ko…

The Current Role of Bevacizumab in the Treatment of Hereditary Hemorrhagic Telangiectasia Related Bleeding

Mayo Clinic. Author: James R. Gossage, MD This article is available for public use and does not require purchase. Click to view the full article.

Intravenous Bevacizumab for Refractory Hereditary Hemorrhagic Telangiectasia Related Epistaxis and Gastrointestinal Bleeding

Mayo Clinic. Authors: Vivek N. Iyer, MD, MPH; Dinesh R. Apala, MBBS; Bibek S. Pannu, MBBS; Aditya Kotecha, MBBS; Waleed Brinjikji, MD; Michael D. Leise, MD; Pat…

HHT is More than a Bleeding Nose – What an ENT Doctor Needs to Know About HHT and Why.

Professor Anette Kjeldsen, Member of the VASCERN HHT Working Group and the HHT Center of Excellence at Odense University Hospital, Denmark,  provides and overvi…

An Overview of Hereditary Hemorrhagic Telangiectasia (HHT)

This video is presented by Professor Claire L. Shovlin, Chair VASCERN HHT Working Group  and Director of the HHT Center of Excellence at Hammersmith Hospital –…

How to Guide: Fundraiser for HHT

How to Guide: Birthday Donations for HHT

HHT Scientific Conference Summaries (recorded)

  Drs. Hughes, Faughnan and Andrejecsk provide a first hand synopsis of the HHT science presented in Dubrovnik, Croatia where over 200 voices were heard fr…

Pulmonary Arteriovenous Malformations (PAVMs) and Hereditary Hemorrhagic Telangiectasia (HHT)

Dr. Marie Faughnan, Cure HHT Scientific Research Director and Director of the HHT Center of Excellence at St. Michael’s Hospital / University of Toronto, provid…

Surgical Treatment vs Nonsurgical Treatment for Brain Arteriovenous Malformations in Patients with HHT: A Retrospective Multicenter Consortium Study

Neurosurgery. Authors: Meybodi, AT, Kim, H., Nelson, J., Hetts, SW., Krings, T, terBrugge, KG, Faughnan, ME, Lawton, MT, and the Brain Vascular Malformation Con…

Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia

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 condition…

Diagnosis and Procedure Codes for HHT

Diagnosis and procedure codes are important for insurance processing, but they also help determine a more accurate prevalence of the disease. Make sure your med…

Surgeon General’s My Family Health Portrait

Completing your family tree is a critical first step in identifying family members who may have inherited HHT. Provided by the Surgeon General, “My Family Healt…

My Family Has HHT Pamphlet

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 uncerta…

Abstracts – 12th HHT International Scientific Conference (2017)

Angiogenesis. This article can be purchased directly from the publisher. Click to view the article description and purchase options.

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

Angiogenesis. Authors: Jillian W. Andrejecsk, Anna E. Hosman, Luisa M. Botella, Claire L. Shovlin, Helen M. Arthur, Sophie Dupuis-Girod, Elisabetta Buscarini, C…

Learn More About HHT Brochure

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…

Hereditary Haemorrhagic Telangiectasia: Novel cardiopulmonary insights

Author: Veronique M.M. Vorselaars. This article is available for public use and does not require purchase. Click to view the full article.

Find Government Offices in Your County

Need to contact your county government official? Look no further. Find government offices in your county. The most accurate internet database of county governme…

Centers for Medicare & Medicaid Services

CMS.gov is a federal government website managed and paid for by the US Centers for Medicare and Medicaid Services. Information specific to Medicare, Medicaid/CH…

Centers for Disease Control and Prevention (CDC)

The Centers for Disease Control and Prevention provides a medical definition of HHT on their website and links through to related resource materials.

Children’s Health Insurance Program (CHIP)

Medicaid and Children’s Health Insurance Program (CHIP) offer free or low-cost health insurance for kids and teens. Children can get regular check-ups, immuniza…

Medicaid.gov

Your child may be eligible for free or low-cost health insurance. Medicaid and Children’s Health Insurance Program (CHIP) offer free or low-cost health insuranc…

Disability Benefits – Social Security Administration

Do you qualify for Social Security disability benefits? Social Security programs serve as vital financial protection for working men and women, children, the di…

HealthCare.gov

Exploring health insurance options in your state? Healthcare.gov is a federal government website managed by the U.S. Centers for Medicare and Medicaid Services….

Genetics Home Reference – U.S. National Library of Medicine, NIH

Genetics Home Reference provides consumer-friendly information about the effects of genetic variation on human health.

The Use of US Health Insurance Data for Surveillance of Rare Disorders: HHT

Genetics in Medicine (2014); Authors: Scott D. Grosse, PhD, , Sheree L. Boulet, DrPH, MPH, , Althea M. Grant, PhD, Mary M. Hulihan, MPH, and Marie E. Faughnan,…

Disability Definition According to Social Security Administration

The Social Security Administration clearly defines “disability” on their website. See the criteria for an HHT-related disability.