Useful Links to Outside Organizations
Links to outside medical and government organizations that provide information useful for HHT patients.
Related Resources
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…
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Heartland Regional Genetics Network
Español – 2022Heartland Regional Genetics Network ofrece materiales gratuitos en español para la comprensión de la genética y las enfermedades raras.
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The Rare Genomes Project
Organization, Patient Tool, Provider Tool – 2022The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected rare disease who do not have a genetic diagnosis. The goal of their project is two-fold: (1) pro…
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Meta | Science Discovery Platform
Organization, Scientific Literature – 2021Meta is a free research discovery tool from the Chan Zuckerberg Initiative, providing a faster way to understand and explore science through personalized feeds. Meta puts biomedical research in context so you can advance your work or take it in new d…
MoreMedlinePlus – US National Library of Medicine National, NIH
Organization, Scientific Literature – 2020MedlinePlus – U.S. National Library of Medicine: an online health information resource for patients and their families and friends.
MorePubMed – US National Library of Medicine National, NIH
Organization, Scientific Literature – 2020PubMed – NIH National Library of Medicine: National Center for Biotechnology Information and comprising more than 30 million citations for biomedical literature from Medline, including full-text content.
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AirMedCare Network
Organization – 2020AirMedCare Network is a membership organization. If you or your family have a medical emergency, their alliance of affiliated air ambulance helicopters and airplanes can provide medical transport, dramatically reducing travel time to an emergency tre…
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Air Ambulance Worldwide
Organization – 2020Need 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 flight services, from our medical bed-to-bed private air ambulance service for patients with…
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Mercy Flight Southeast
Organization – 2020Need 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 coordinates with volunteer pilot that desire to be involved in “public benefit flying.” We…
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InsuranceWith – Travelling with a Medical Condition
Organization – 2020Traveling with a medical condition can be challenging. This resource will address some of the common problems associated with travelling abroad, providing expert advice and tips throughout. You will find specific information on: travelling with medic…
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Angel Flight
Organization – 2020Need 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, and friends. They will arrange free air transportation for any legitimate, charitable, m…
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Air Care Alliance
Organization – 2020Need 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 organizations whose volunteer pilot members are dedicated to community service.Learn who we…
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Medicare Rights Center
Organization – 2020Do you understand your Medicare rights and benefits? Medicare Rights Center can help you navigate the Medicare system and secure quality health care. The Medicare Rights Center is a national, nonprofit consumer service organization that works to ensu…
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Kaiser Family Foundation Guide to the Medicaid Appeals Process
Organization – 2020Medicaid appeals process made simple. Kaiser Family Foundation has developed a Guide to the Medicaid Appeals Process which provides case studies, flow charts, timelines, etc. There is a specific appeals process for each type of health insurance inclu…
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Patient Advocate Foundation
Organization – 2020Are you looking for a local, state or federal programs to assist with your healthcare needs? Patient Advocate Foundation seeks to empower patients to take control of their health care. Case managers work with patients to discover local, state, and fe…
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