Kaiser Family Foundation Guide to the Medicaid Appeals Process
Medicaid appeals process made simple. Kaiser Family Foundation has developed a Guide to the Medicaid Appeals Process which provides case studies, flow charts, t…
MorePatient Advocate Foundation
Are you looking for a local, state or federal programs to assist with your healthcare needs? Patient Advocate Foundation seeks to empower patients to take contr…
MoreRonald McDonald House
Do you need a place to stay when you visit an HHT Center of Excellence? Ronald McDonald Houses may be just what the doctor ordered. Ronald McDonald Houses aroun…
MoreGenetic and Rare Diseases Information Center
Looking for current, reliable and easy to understand information about rare or genetic diseases? Contact GARD Information Specialist. Affiliated with the Nation…
MoreNational Organization for Rare Disorders (NORD)
Cure HHT partners with NORD to empower the rare disease community. NORD maintains a Rare Disease Database, Rare Action Network, Patient Assistance Program, and…
MoreAmerican Society of Hematology – Physician Resources
Have questions about anemia? The American Society of Hematology has the answers. The American Society of Hematology (ASH) is committed to helping practicing hem…
MoreAmerican Society of Hematology – Patient Resources
Have questions about anemia? The American Society of Hematology has the answers. The American Society of Hematology has developed resources for the patient sect…
MoreClot Connect
Clot Connect is an education project of the UNC Blood Clot Outreach Program in the UNC Hemophilia and Thrombosis Center. Clot Connect’s mission is to increase k…
MoreAnatomy Gifts Registry
Tissue or whole body donation allows advancements in research that aren’t possible using animal or artificial models. The mission of AGR’s caring & compassi…
MorePulmonary Hypertension Association
The Pulmonary Hypertension Association (PHA) is a 501(c) organization non-profit support, education, advocacy and awareness association for pulmonary hypertensi…
MoreSystemic bevacizumab for high-output cardiac failure in HHT: an international survey of HHT centers
Orphanet Journal of Rare Diseases. Authors: Hanny Al-Samkari, Hasan A. Albitar, Scott E. Olitsky, Marianne S. Clancy and Vivek N. Iyer. This article is availabl…
MoreAbstracts – 13th HHT International Scientific Conference (2019)
Angiogenesis. This article can be purchased directly from the publisher. Click to view the article description and purchase options.
MoreExecutive Summary – 13th HHT International Scientific Conference (2019)
Angiogenesis. This article can be purchased directly from the publisher. Click to view the article description and purchase options.
MoreHHT Lung AVMs – A Tangled Web (recorded)
Dr. David Riggans, Interventional Radiologist from the Augusta Vascular Center at the Augusta University HHT Center presents his talk, “HHT Lung AVMs – A Tangle…
MoreIVF and Preimplantation Genetic Testing for HHT (recorded)
Katie Wusik Healy, LGC, MS, Genetic Counselor at the Cincinnati HHT Center of Excellence, talks about pre-implantation genetic testing (PGT), including what you…
Direct LinkHHT Frontlines Scientific Newsletter (2019)
June 2019. Cure HHT’s biannual newsletter that centralizes and summarizes select and important publications about HHT for patients, clinicians, and scientists.
MoreIdentification of Retinal Vascular Lesions Using Ultra-Widefield Angiography in HHT Patients
Study to determine the presence and to characterize the location of retinal vascular lesions in patients with HHT. Of the 18 patients recruited, fine telangiect…
MoreIdentification of Retinal Vascular Lesions Using Ultra-Widefield Angiography in HHT Patients
Ophthalmology Retina. Authors: Sampat Sindhar BS, Bliss E.O’Bryhim MD, PhD, Jordan Licata DO, Jay F.Piccirillo MD, Rajendra S.Apte MD, PhD. This article can be…
MoreAnemia and Iron Deficiency in HHT (recorded)
Anemia is commonly experienced by those affected with HHT and it frequently results from bleeding of the nose and/or gastrointestinal tract. Dr. Adrienne Hammil…
MoreScreening & Treatment of Brain AVMs in HHT (recorded)
Have you been screened for a brain AVM? If you have a brain AVM, do you know the guidelines for screening and treatment? Arteriovenous Malformations (AVMs) repr…
MoreEating for Health: Dietary Choices that Impact Bleeding
Ever wonder if certain foods trigger nosebleeds? Lisa Mannik, Registered Dietitian in the division of respirology at St. Michael’s Hospital HHT Centre in Toront…
MoreMy HHT Tracker (recorded)
Peter Lauwers, lead member of the Arbormoon Software, Inc. development team, walks through all of the features of this FREE new iOS App for HHT patients. My HHT…
MoreMy HHT Tracker – URL Links
My HHT Tracker app allows you to educate yourself about HHT and track your health at no cost to the user. The app is available on Apple iOS only. Use the app to…
MoreMy HHT Tracker Quick Guide
My HHT Tracker app allows you to educate yourself about HHT and track your health at no cost to the user. The app is available on Apple iOS only. Use the app to…
MoreSystemic bevacizumab for the treatment of chronic bleeding in HHT
Journal of Internal Medicine. Authors: Al-Samkari, H., Kritharis, A., Rodriguez-Lopez, J.M., and Kuter, D.J. This article can be purchased directly from the pub…
MorePazopanib May Reduce Bleeding in Hereditary Hemorrhagic Telangiectasia
Angiogenesis. Authors: Marie E. Faughnan, James R. Gossage, Murali M. Chakinala, S. Paul Oh, Raj Kasthuri, Christopher C. W. Hughes, Justin P. McWilliams, Josep…
MoreEndoglin Interacts with VEGFR2 to Promote Angiogenesis
Angiogenesis is the physiologic process by which new blood vessels arise from pre-existing vessels. Endoglin, a TGF-β coreceptor predominantly expressed in endo…
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