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Newly Diagnosed
Resources to guide newly diagnosed patients through initiating screening and treatment locally and at HHT Centers of Excellence.
Related Resources
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Ask the Doctor
Webinar – 2017Dr. James Gossage, Director of the Pulmonary Vascular Disease program and the HHT Center of Excellence at Augusta University, answers questions about HHT screening, treatment and management. Members of the Cure HHT community submitted a variety of qu…
More20-year Follow-Up Study of Danish HHT Patients – Survival and Causes of Death
Scientific Literature – 2016Orphanet Journal of Rare Diseases. Authors: Anette Kjeldsen, Katrine Saldern Aagaard, Pernille Mathiesen Tørring, Sören Möller and Anders Green. This article is available for public use and does not require purchase. Click to view the full article.
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Know the Signs & Symptoms of HHT
Fact Sheet – 2016Recognizing HHT symptoms is half the battle. Knowing the signs and symptoms of HHT can help save a life.
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HHT Facts at a Glance
Fact Sheet – 2016The most critical HHT information highlighted on a single sheet. HHT Quick Facts provides you and your physician critical information about organs typically involved, symptoms of the disease, need for prophylactic antibiotics and use of IV filters.
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Diagnosis and Misdiagnosis of HHT
Fact Sheet – 2016HHT signs and symptoms are not recognized and often mistaken for other conditions. Misdiagnosis and delay in diagnosis pose the greatest risk to a person with HHT. Knowing the common misdiagnoses can lead to faster identification of HHT, life-saving…
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My Partner Has HHT
Fact Sheet – 2016When your partner or spouse has HHT, you are also affected by the disease. Learn how your partner is affected by HHT, what you can do to help them, how to prepare for parenting and ways to take care of yourself.
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HHT & Depression
Fact Sheet – 2016The stress of living with a genetic disease can lead to depression. Learn how to recognize the signs and symptoms.
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Living with HHT
Fact Sheet – 2016Living with HHT can be stressful at times, and most people can manage it. HHT does not have to define your life. Follow these six simple steps and start living life with HHT.
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Talking to Your Physician about HHT
Fact Sheet – 2016It’s important to talk to your doctor about your HHT. Use this fact sheet as a resource when you and your doctor discuss your HHT treatment and management plan.
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Advice For People Newly Diagnosed With HHT
Fact Sheet – 2016You’ve just been diagnosed with HHT, now what? This fact sheet will help guide you through your recent diagnosis.
MoreExecutive Summary – 11th HHT International Scientific Conference (2015)
Scientific Literature – 2015Angiogenesis. Authors: Helen Arthur, Urban Geisthoff, James R. Gossage, Christopher C. W. Hughes, Pascal Lacombe, Mary E. Meek, Paul Oh, Beth L Roman, Scott O. Trerotola, Sebastiaan Velthuis, and Whitney Wooderchak-Donahue. This article can be purcha…
MoreOptimal Management of HHT
Scientific Literature – 2014HHT remains frequently underdiagnosed and many families do not receive the appropriate screening and treatments. This article provides an overview of the clinical features of HHT, discusses the clinical and genetic diagnostic strategies, and presents…
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Optimal Management of HHT
Scientific Literature – 2014Journal of Blood Medicine. Authors: Neetika Garg, Monica Khunger, Arjun Gupta, and Nilay Kumar. This article is available for public use and does not require purchase. Click to view the full article.
MoreA Long Diagnostic Delay in Patients with HHT
Scientific Literature – 2012Orphanet Journal of Rare Diseases. Authors: Paola Pierucci, Gennaro M. Lenato, Patrizia Suppressa, Patrizia Lastella, Vincenzo Triggiani, Raffaella Valerio, Mario Comelli, Daniela Salvante, Alessandro Stella, Nicoletta Resta, Giancarlo Logroscino, Fr…
More![](https://curehht.org/wp-content/uploads/2017/11/Blue-Heix-Beige-BG-300x156.jpg)
HHT International Clinical Guidelines (2009)
Guidelines – 2009Published by the Journal of Medical Genetics in 2009, the International Guidelines for the Diagnosis and Management of HHT (First “International Guidelines for the Diagnosis and Management of HHT”) is a comprehensive document to share with your physi…
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HHT Kids Day – San Francisco
Do you live near San Francisco? We have an event for you! HHT Kids Day, co-hosted by UCSF HHT Center of Excellence and Cure HHT at the California Academy of Sciences Museum promises to be an amazing d…
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A Monumental $128 Million Step Forward for HHT Research
April 3, 2024![](https://curehht.org/wp-content/uploads/2024/03/HHT-CME-graphic-1-wpv_150x100_center_center.jpg)
HHT Continuing Education Program for medical professionals
March 22, 2024![](https://curehht.org/wp-content/uploads/2024/03/IMG_3674_cropped-scaled-wpv_150x100_center_center.jpg)
Cure HHT Takes on Capitol Hill
March 16, 2024![](https://curehht.org/wp-content/uploads/2024/02/SciCon-15_Logo-France-rectangle-wpv_150x100_center_center.jpg)
15th HHT International Scientific Conference
March 1, 2024![](https://curehht.org/wp-content/uploads/2022/02/Kisses-for-a-Cure-web-post-image2-1-wpv_150x100_center_center.jpg)