No-Cost Genetic Testing for HHT and Other Rare Diseases: Rare Genomes Project
The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected singe…
MoreBedside to Bench: How the HHT Community Drives Research Initiatives (Recorded)
In March 2020, Cure HHT was 1 of 30 organizations selected to participate in the Chan Zuckerberg Initiative (also known as CZI) Rare is One Project. This ambiti…
MoreLas Guías Internacionales de HHT: Epistaxis – Tratamiento Farmacológico (Grabado)
El Dr. Marcelo Serra, Director de la Unidad de HHT del Hospital Italiano de Buenos Aires brinda información sobre el tratamiento farmacológico no quirúrgico del…
MoreHHT International Guidelines: Brain Vascular Malformations (VMs) (Recorded)
Dr. Marie Faughnan, Director, Toronto HHT Centre of Excellence, discusses Brain Vascular Malformations (VMs) as they relate to HHT. Dr. Faughnan is a renowned H…
MorePhysician Webinar: The Role of Liver Imaging in HHT (Recorded)
Liver involvement occurs in approximately 75% of people with HHT. While many people are asymptomatic, the complications associated with liver involvement have h…
MoreGiving hereditary haemorrhagic telangiectasia the attention it deserves
The Lancet Haematology. Author: Hanny Al-Samkari, MD. This article can be purchased directly from the publisher. Click to view the article description and purch…
MoreInternational HHT Guidelines: Diagnosis
Dr. Justin McWilliams, Co-Director, UCLA HHT Center of Excellence and Katie Wusik, Genetic Counselor for the Cincinnati Children’s Hospital HHT Center of Excell…
MoreIron Replacement in HHT
Iron deficiency anemia is common in people with HHT with an estimated prevalence of 50%. Further, a number of people with HHT develop symptomatic iron deficienc…
MoreInternational HHT Guidelines: Epistaxis/Nosebleed Management (Recorded)
Dr. Jay Piccirillo, ENT, Washington University HHT Center of Excellence and Dr. James Gossage, Director, Augusta University HHT Center of Excellence discuss the…
MoreLas Guías Internacionales de HHT: Epistaxis en HHT (Grabado)
La Dra. Yesica Lijdens, Otorrinolaringóloga de la Unidad HHT Hospital Italiano de Buenos Aires, y el Dr. Federico Urquiola, Otorrinolaringólogo y Coordinador OR…
MoreInternational HHT Guidelines: Liver Vascular Malformations (Recorded)
Dr. Kevin Whitehead, Co-Director, University of Utah HHT Center of Excellence and Dr. Josanna Rodriguez-Lopez, Director, Massachusetts General Hospital HHT Cent…
MoreInternational HHT Guidelines: Pulmonary AVMs (Recorded)
Dr. Miles Conrad, Co-Director, University of California San Francisco HHT Center of Excellence and Dr. Mollie Meek, Director, University of Arkansas for Medical…
MoreHHT Medical Emergency Wallet Card
In the event of an emergency, this printable compact medical card is wallet-sized and can speak for an HHT patient when they can’t. The card features a descript…
MoreInternational HHT Guidelines: Pregnancy and Women’s Issues (Recorded)
Dr. Andrea Lausman, Maternal Fetal Medicine Specialist, and Dr. Filomena Meffe, Chief, Department of Obstetrics and Gynecology, at the Toronto HHT Centre of Exc…
MoreNuts and Bolts of A Clinical Trial – the PATH-HHT Study (Recorded)
Research is the key to the future health and quality of life for HHT patients. “Diseases can only be cured when scientists understand them. This understanding,…
MoreInternational HHT Guidelines: Pediatrics (Recorded)
Dr. Andrew White, Co-Director, Washington University / St. Louis Children’s Hospital HHT Center of Excellence and Dr. Adrienne Hammill, Director, Cincinnati Chi…
MoreMeta | Science Discovery Platform
Meta is a free research discovery tool from the Chan Zuckerberg Initiative, providing a faster way to understand and explore science through personalized feeds….
MoreLas Guías Internacionales de HHT: Anemia (Recorded)
El Dr. Marcelo Serra, Internista y Director de la Unidad de HHT, Hospital Italiano de Buenos Aires y la Dra. Yesica Lijdens, Otorrinolaringóloga del HHT Hospita…
MoreCure HHT Actualizaciones Oficiales de Salud: Coronavirus Disease (CV)
Página de Actualizaciones de salud oficiales de Cure HHT relacionada con COVID-19, que incluye actualizaciones y declaraciones oficiales, así como enlaces y otr…
MoreMi Checklist Sobre Cuidados de HHT: Nasales
Las listas de verificación “Mi HHT” son una serie de listas de verificación por área temática para que las personas con HHT se autogestionen y las lleven a su m…
MoreMi CHECKLIST Sobre Cuidados de HHT: Anemia
Las listas de verificación “Mi HHT” son una serie de listas de verificación por área temática para que las personas con HHT se autogestionen y las lleven a su m…
MoreInternational HHT Guidelines: GI Bleeding Management
Dr. Murali Chakinala, Co-Director, Washington University HHT Center of Excellence and Dr. Vivek Iyer, Director, Mayo Clinic HHT Center of Excellence as they dis…
MoreInternational HHT Guidelines: Anemia (Recorded)
Dr. Raj Kasthuri, Director, UNC Chapel Hill HHT Center of Excellence and Dr. Hanny Al-Samkari, Associate Director, Massachusetts General Hospital HHT Center of…
MoreInternational HHT Guidelines – Overview (Recorded)
Join Dr. Marie Faughnan, Director, Toronto HHT Centre of Excellence as she provides an overview of the newly updated International HHT Guidelines and how they a…
MoreNIH & Genetic Alliance – Coronavirus Vaccines (Recorded)
“Francis Collins, Director of the National Institutes of Health, shares with us why it is critical that individuals living with chronic diseases and conditions…
MoreCOVID Vaccine Infographic
Review information related to COVID Vaccines for People with HHT including vaccine comparison chart, common myths, and special considerations for those with HHT…
MoreCOVID-19 Official Updates Page
Cure HHT Official Health Updates page related to COVID-19, including official updates and statements, as well as links and other resources.
MoreHHT and COVID-19: Basics and What We Know in HHT
Dr. Justin McWilliams’ presentation slides related to HHT and COVID-19 from the 2021 Virtual Meet-Up, HHT and COVID: 1 Year Later. Dr. McWilliams is an Interven…
MoreHHT and COVID-19: Vaccines
Dr. Marie Faughnan’s presentation slides related to HHT and COVID-19 vaccinations, from the 2021 Virtual Meet-Up, HHT and COVID: 1 Year Later. Dr. Faughnan is a…
MoreHHT and COVID-19: Clotting and Anemia
Dr. Raj Kasthuri’s presentation slides related to HHT, COVID-19 and clotting and anemia, for the 2021 Virtual Meet-Up, HHT and COVID: 1 Year Later. Dr. Kasthuri…
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