Nosebleeds or Epistaxis
Resources to guide physicians in the management of epistaxis.
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Development and performance of a hereditary hemorrhagic telangiectasia-specific quality-of-life instrument
Scientific Literature – 2022Blood Advances. Authors: Raj S Kasthuri, Shruti Chaturvedi, Sonia Thomas, Nathan Vandergrift, Carla Bann, Nicole Schaefer, Marianne S Clancy, Reed Pyeritz, and Keith R McCrae. This article is available for public use and does not require purchase. Cl…
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Bedside to Bench: How the HHT Community Drives Research Initiatives (Recorded)
Webinar – 2021In 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 ambitious project is lifting up the work that patient communities are doing to accelerate resear…
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Las Guías Internacionales de HHT: Epistaxis – Tratamiento Farmacológico (Grabado)
Español, Webinar – 2021El Dr. Marcelo Serra, Director de la Unidad de HHT del Hospital Italiano de Buenos Aires brinda información sobre el tratamiento farmacológico no quirúrgico del sangrado nasal en HHT. También revisó las recomendaciones de las nuevas Directrices inter…
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Giving hereditary haemorrhagic telangiectasia the attention it deserves
Article – 2021The Lancet Haematology. Author: Hanny Al-Samkari, MD. This article can be purchased directly from the publisher. Click to view the article description and purchase options.
MoreIron Replacement in HHT
Policy Statement – 2021Iron deficiency anemia is common in people with HHT with an estimated prevalence of 50%. Further, a number of people with HHT develop symptomatic iron deficiency without anemia. Iron deficiency is an under recognized and sub-optimally managed complic…
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International HHT Guidelines: Epistaxis/Nosebleed Management (Recorded)
Webinar – 2021Dr. Jay Piccirillo, ENT, Washington University HHT Center of Excellence and Dr. James Gossage, Director, Augusta University HHT Center of Excellence discuss the new International HHT Guidelines for Epistaxis (Nosebleed Management). Both doctors are r…
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Las Guías Internacionales de HHT: Epistaxis en HHT (Grabado)
Español, Webinar – 2021La Dra. Yesica Lijdens, Otorrinolaringóloga de la Unidad HHT Hospital Italiano de Buenos Aires, y el Dr. Federico Urquiola, Otorrinolaringólogo y Coordinador ORL de la Unidad HHT Hospital Italiano de Buenos Aires, brindan información sobre cómo trata…
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International HHT Guidelines – Overview (Recorded)
Webinar – 2021Join Dr. Marie Faughnan, Director, Toronto HHT Centre of Excellence as she provides an overview of the newly updated International HHT Guidelines and how they are used to set the standard of care globally for the diagnosis and treatment of HHT. Dr. F…
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WEBINAR: Nociones básicas y generales sobre HHT (en español) (Recorded)
Español, Webinar – 2021Cure HHT se enorgullece de presentar el primer seminario web en ESPAÑOL. El Dr. Marcelo Serra, especialista en Medicina Interna y Director de la Unidad de HHT del Hospital Italiano de Buenos Aires, brinda una visión general de HHT que es comprensible…
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Virtual Meet-Up: HHT & COVID – 1 Year Later (Recorded)
Webinar – 2021A rare opportunity to receive factual information surrounding COVID-19 and HHT from leading HHT experts who have been on the frontlines since the very beginning of the COVID-19 pandemic. This interdisciplinary group of experts discuss the multiple as…
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Patient Symptom & Care Checklists
Provider Tool – 2020Download and distribute “My HHT Care Checklists” to patients to complete and return to you, including: HHT Care, HHT Diagnosis, Anemia, Brain VMs, Pediatric, Teen Years, Nosebleed, GI Bleeding, Liver VMs, Pregnancy & Delivery, and Pulmonary AVMs….
MoreEfficacy of Timolol in a Novel Intranasal Thermosensitive Gel for HHT–Associated Epistaxis: A Randomized Clinical Trial
Scientific Literature – 2020JAMA Otolaryngology Head & Neck Surgery. Authors: Andrew M. Peterson, MSCI, Jake J. Lee, MD, MSCI, DorinaKallogjeri, MD, MPH, et al. This article can be purchased directly from the publisher. Click to view the article description and purchase opt…
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Virtual Meet-up: Ask the Doctor – Nosebleeds 101 (Recorded)
Webinar – 2020Watch our “Ask the Doctor” series with Dr. Scott Olitsky, Cure HHT Chief Medical Officer, and HHT patient, Chelsea McBride as they discuss EVERYTHING nosebleed related. From current drug therapies and surgical options, to food triggers and more, Dr….
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Physician Fact Sheet
Fact Sheet – 2020A compact fact sheet that can be hung on your refrigerator or carried with you to a new physician appointment, and shared in the event of an unexpected trip to the emergency room where health care providers may be unfamiliar with HHT. This fact sheet…
MoreRose Geranium Oil Compound
Scientific Literature – 2020This article is available for public use and does not require purchase. Click to view the full article.
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WMAR Baltimore: Musician with rare disease overcomes health scare
March 9, 2022 | WMAR Baltimore | By Abby Isaacs. Musician with rare disease overcomes health scare – “A rare disease turned a Maryland man’s life upside down and it all started with one symptom. Now t…
