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
Medicare Rights Center
Do you understand your Medicare rights and benefits? Medicare Rights Center can help you navigate the Medicare system and secure quality health care. The Medica…
More
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…
More
Patient 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…
More
Ronald 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…
More
Genetic 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…
More
National 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…
More
American 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…
More
Clot 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…
More
Anatomy 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…
More
Pulmonary Hypertension Association
The Pulmonary Hypertension Association (PHA) is a 501(c) organization non-profit support, education, advocacy and awareness association for pulmonary hypertensi…
More