Virtual Meet-up: Ask the Doctor – Nosebleeds 101 (Recorded)
Watch our “Ask the Doctor” series with Dr. Scott Olitsky, Cure HHT Chief Medical Officer, and HHT patient, Chelsea McBride as they discuss EVERYTHING nosebleed…
More
Ask the Doctor: HHT and Pulmonary Hypertension (recorded)
Dr. Scott Olitsky, Cure HHT Chief Medical Officer, and Michael Knaapen, Director, Patient and Caregiver Programs at the Pulmonary Hypertension Association, disc…
More
PH and HHT Patient Brochure
Did you know that if you have HHT you are at risk for Pulmonary Hypertension? The Pulmonary Hypertension Association developed a brochure for PH and HHT patient…
More
Physician Fact Sheet
A 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…
More
Managing Stress and Emotional Hurdles in HHT (recorded)
Dr. Abbey Hughes, board-certified rehabilitation psychologist and assistant professor in the Department of Physical Medicine and Rehabilitation at the Johns Hop…
MoreCerebrovascular Malformations in a Pediatric Hereditary Hemorrhagic Telangiectasia Cohort
Pediatric Neurology. Authors: Lauren A. Beslow, MD, MSCE; Jake Breimann, BA, Daniel J. Licht, MD; Jake Waldman; Samantha Fallacaro; Reed E. Pyeritz, MD, PhD; El…
More
Navigating the NEW Resource Library (recorded)
On May 20, 2020, Nicole Schaefer, Director of Medical and Scientific Programs and Phyllis Loveland, Operations and Communications Manager took a look into all t…
MoreRose Geranium Oil Compound
This article is available for public use and does not require purchase. Click to view the full article.
MoreRare Coagulation Disorders Resource Room – HHT
Rare Bleeding Disorders – HHT Overview.
MorePubMed – US National Library of Medicine National, NIH
PubMed – NIH National Library of Medicine: National Center for Biotechnology Information and comprising more than 30 million citations for biomedical literature…
MoreMedlinePlus – US National Library of Medicine National, NIH
MedlinePlus – U.S. National Library of Medicine: an online health information resource for patients and their families and friends.
More
COVID-19: Mind over Matter (recorded)
Connect with Dr. Sara Palmer and Cure HHT staff member, Phyllis Loveland, Operations and Communications Manager, as they help you mentally navigate these challe…
More
Cure HHT Social Media Channels
Get the lastest information on everything HHT — clinical trials, educational events, regional awareness activities, revised clinical guidelines, COVID-19 updat…
More
COVID-19 Fact Check Links
How do you know if what you are being told about COVID-19 is true? Before sharing information with friends and family, make sure you use these reliable fact che…
MoreCOVID-19 Reliable Resources
When learning about COVID-19, it is important that you receive reliable information from vetted sources about COVID-19.
MoreBevacizumab (Avastin) Use In HHT
Hereditary hemorrhagic telangiectasia (HHT, also known as OslerWeber-Rendu Syndrome) is a condition that is characterized by focal proliferation of blood vessel…
MoreBevacizumab for treating HHT patients with severe hepatic involvement or refractory anemia
PLoS One. Authors: Carolina Vázquez, María Laura Gonzalez, Augusto Ferraris, Juan Carlos Bandi, and Marcelo Martín Serra. This article is available for public u…
More
The Science Behind the 2019 Scientific Conference (recorded)
Philippe Marambaud, PhD and Andy White, MD discuss important advances in HHT research which were presented at the 2019 HHT International Scientific Conference i…
More
AirMedCare Network
AirMedCare Network is a membership organization. If you or your family have a medical emergency, their alliance of affiliated air ambulance helicopters and airp…
More
Living with HHT (recorded)
Carrie Fiasco, Licensed Social Worker with the Cincinnati HHT Center of Excellence, explores the effects of HHT on your mental health and family relationships….
More
Future Treatments for Hereditary Hemorrhagic Telangiectasia
Orphanet Journal of Rare Diseases. Authors: Florian Robert, Agnès Desroches-Castan, Sabine Bailly, Sophie Dupuis-Girod and Jean-Jacques Feige. This article is a…
More
Air Ambulance Worldwide
Need transportation to an HHT Center of Excellence? Air Ambulance Worldwide may be able to help. Air Ambulance Worldwide, Inc. offers a wide range of medical fl…
More
Mercy Flight Southeast
Need transportation to an HHT Center of Excellence? Mercy Flight Southeast may be able to help. Mercy Flight™ Southeast, Inc. is a non-profit organization that…
More
InsuranceWith – Travelling with a Medical Condition
Traveling with a medical condition can be challenging. This resource will address some of the common problems associated with travelling abroad, providing exper…
More
Angel Flight
Need transportation to an HHT Center of Excellence? Angel Flight may be able to help. Angel Flight is a non-profit charitable organization of pilots, volunteers…
More
Air Care Alliance
Need transportation to an HHT Center of Excellence? Air Care Alliance may be able to help. The Air Care Alliance is a nationwide league of humanitarian flying o…
More
Genetic Information Nondiscrimination Act (GINA)
Afraid of genetic discrimination? You are protected by GINA, a federal law that protects individuals from genetic discrimination in health insurance and employm…
More