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HHT in children
Resources for understanding the different screening and treatment needs in children.
Related Resources
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My HHT Care Checklist
Patient Tool – 2020The “My HHT” checklists are a series of checklists by topic area for people with HHT to self-manage their care and bring to their doctor. These checklists are based on the care recommended in the HHT Guidelines. Start with the “Checklist for My HHT C…
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My Child’s HHT Care Checklist
Patient Tool – 2020The “My HHT” checklists are a series of checklists by topic area for people with HHT to self-manage their care and bring to their doctor. These checklists are based on the care recommended in the HHT Guidelines. Start with the “Checklist for My HHT C…
MoreCerebrovascular Malformations in a Pediatric Hereditary Hemorrhagic Telangiectasia Cohort
Scientific Literature – 2020Pediatric Neurology. Authors: Lauren A. Beslow, MD, MSCE; Jake Breimann, BA, Daniel J. Licht, MD; Jake Waldman; Samantha Fallacaro; Reed E. Pyeritz, MD, PhD; Elizabeth Goldmuntz, MD; and Arastoo Vossough, MD, PhD. This article can be purchased direct…
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The Science Behind the 2019 Scientific Conference (recorded)
Webinar – 2020Philippe Marambaud, PhD and Andy White, MD discuss important advances in HHT research which were presented at the 2019 HHT International Scientific Conference in Puerto Rico. Learn about advancements in drug therapies for bleeding, screening and trea…
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Applicability of the Curacao Criteria for the Diagnosis of HHT in the Pediatric Population
Scientific Literature – 2018The Journal of Pediatrics. Authors: Kristy S. Pahl, Arkopal Choudhury, Katie Wusik, Adrienne Hammill, Andrew White, Katharine Henderson, Jeffrey Pollak, and Raj S. Kasthuri. This article is available for public use and does not require purchase. Clic…
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HHT Scientific Conference Summaries (recorded)
Webinar – 2018Drs. Hughes, Faughnan and Andrejecsk provide a first hand synopsis of the HHT science presented in Dubrovnik, Croatia where over 200 voices were heard from 23 countries. They reviewed the 12th HHT International Conference Executive Summary of…
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My Family Has HHT Pamphlet
Brochure – 2017Looking 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 uncertain or anxious about the symptoms of HHT experienced by themselves and/or their parents. Th…
MoreExecutive Summary – 12th HHT International Scientific Conference (2017)
Scientific Literature – 2017Angiogenesis. Authors: Jillian W. Andrejecsk, Anna E. Hosman, Luisa M. Botella, Claire L. Shovlin, Helen M. Arthur, Sophie Dupuis-Girod, Elisabetta Buscarini, Christopher C. W. Hughes, Franck Lebrin, Christine L. Mummery, Marco C. Post, and Johannes…
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HHT: Caring for the Younger Generation (recorded)
Webinar – 2017Lynne Sekarski, MSN, RN, CPN, nurse coordinator for the St. Louis Children’s Hospital HHT Center of Excellence at Washington University, provides an in-depth conversation about HHT and children. Children with HHT are typically asymptomatic but this d…
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Asymptomatic Pulmonary Arteriovenous Malformations in Children with HHT
Scientific Literature – 2017Pediatric Pulmonology. Authors: Ashley M. Gefen and Andrew J. White. This article can be purchased directly from the publisher. Click to view the article description and purchase options.
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My Child Has HHT: Screening Guidelines
Fact Sheet – 2016Screening your child for HHT is an essential part of their preventive health care. HHT runs in families and each child born has a 50% chance of inheriting the HHT gene.
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Family Ties: Genetic Testing
Fact Sheet – 2016As a hereditary disease, HHT has the potential to devastate families if not identified and treated. Some of the most easily identifiable symptoms of HHT don’t manifest until adolescence or adulthood. Be proactive and identify affected family members…
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I Have HHT: For Kids
Fact Sheet – 2016Give your child the tools to overcome HHT challenges. Kids have a natural desire to understand the world around them and HHT can be scary if they don’t understand it. Learn how to take the fear and uncertainty out of HHT and provide your child the to…
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Coping with HHT: For Teens
Fact Sheet – 2016It’s time to take control of your health. As a teenager, you can begin taking care of your HHT health needs and making decisions about your treatments.
MoreDe Novo Arteriovenous Malformation in a Patient with HHT
Scientific Literature – 2015Journal of Neurosurgery. Pediatrics. Authors: Yusuke Shimoda, Toshiya Osanai, Naoki Nakayama, Satoshi Ushikoshi, Masaaki Hokari, Hideo Shichinohe, Takeo Abumiya, Ken Kazumata, and Kiyohiro Houkin. This article is available for public use and does not…
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More Than A Nosebleed: In Loving Memory of Harper
Turning two-years old comes with many changes— from growth spurts to a surging vocabulary. But as her little Harper grew, Rebecca Newman noticed a concerning development: blue fingertips and lips. Imm…
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HHT Kids Day – San Francisco
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June Awareness – Be an HHT Changemaker!
June 1, 2024
A Monumental $128 Million Step Forward for HHT Research
April 3, 2024
HHT Continuing Education Program for medical professionals
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