Brain
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.
Related Resources
Mi Checklist Sobre HHT Cuidados: Malformaciones Vasculares Cerebrales (MVC)
Español, Guidelines, Patient Tool – 2023Las 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 médico. Estas listas de verificación se basan en el cuidado recomendado en las guías de HHT…
More
Research Roundtable: An Inside Look at Exciting Clinical Trials
Webinar – 2023Delve into the exciting clinical research projects underway in HHT! Cassi Friday, PhD will provide an overview of what goes into a clinical trial. Dr. Marie Faughnan (Brain AVM Study), Dr. Keith McCrae (PATH Study), Dr. James Gossage (Pazopanib Trial…
More
A Comprehensive Guide to Managing Your HHT
Brochure, Fact Sheet, Patient Tool – 2022We’ve taken the International HHT Guidelines and distilled them into easily readable factsheets and checklists that can be filled out and given to your physicians. The result is a beautifully bound and curated 48-page publication, A Comprehensive Gui…
More
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…
More
HHT International Guidelines: Brain Vascular Malformations (VMs) (Recorded)
Webinar – 2021Dr. Marie Faughnan, Director, Toronto HHT Centre of Excellence, discusses Brain Vascular Malformations (VMs) as they relate to HHT. Dr. Faughnan is a renowned HHT specialist and will walk the audience through a comprehensive overview of what a brain…
More
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…
More
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…
More
Brain (Cerebral) Vascular Malformations & HHT
Fact Sheet – 2021Companion factsheet to the My HHT Care Checklists patient resources, and based upon updates from the Second International HHT Guidelines published in the Annals of Internal Medicine in 2020.
More
Imaging & HHT
Fact Sheet – 2021Companion factsheet to the My HHT Care Checklists patient resources, and based upon updates from the Second International HHT Guidelines published in the Annals of Internal Medicine in 2020.
More
Diagnosis of HHT
Fact Sheet – 2021Companion factsheet to the My HHT Care Checklists patient resources, and based upon updates from the Second International HHT Guidelines published in the Annals of Internal Medicine in 2020.
More
My HHT Care Checklist
Guidelines, 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…
More
My HHT Brain VM Care Checklist
Guidelines, 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…
More
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…
MoreExecutive Summary – 13th HHT International Scientific Conference (2019)
Scientific Literature – 2019Angiogenesis. This article can be purchased directly from the publisher. Click to view the article description and purchase options.
MoreRelated News
A Monumental $128 Million Step Forward for HHT Research
Today is a monumental day for HHT. The new biotechnology company, Diagonal Therapeutics, officially launched and we wanted to share more about why this is news you simply can’t miss! In short, Diagona…
Cure HHT Takes on Capitol Hill
March 16, 2024
Send hearts & kisses this special Rare Disease Month!
February 14, 2024
Uplifting Athletes Support the Rare Disease Community
February 6, 2024
Celebrate Rare on Rare Disease Day (Feb 29th)
February 3, 2024