Useful Links to Outside Organizations
Links to outside medical and government organizations that provide information useful for HHT patients.
Related Resources
How to Be an HHT Changemaker Part 2: Educate Your Local Provider (Recorded)
Webinar – 2024YOU asked us to educate the medical community on HHT. Learn more about our new HHT Continuing Education Credit Online Platform in Part 2 of our “How to Be an HHT Changemaker” Series. Melissa Dickey, RN, MSN FNP, teaches you how to get your local prov…
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Cure HHT Canada
Organization – 2024Cure HHT Canada is a registered, tax-deductible charitable organization in Canada. The establishment of Cure HHT Canada marks a concentrated effort to expand and increase support of our community in Canada. Supporting Cure HHT Canada will facilitate…
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Angel Flight NE
Organization, Patient Tool – 2023Angel Flight NE is a non-profit organization providing FREE medical air transportation for individuals with limited financial resources, including those suffering from rare diseases, to obtain life-saving medical treatment. Angel Flight NE’s primary…
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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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No-Cost Genetic Testing for HHT and Other Rare Diseases: 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 singe gene disorders who do not have a genetic diagnosis. The goal of their project is two-fold:…
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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…
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.
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.
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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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Join us to learn about sclerotherapy, an innovative treatment offering hope to HHT patients suffering from chronic nosebleeds. Dr. Jay Piccirillo, ENT at Washington University, will explain how this m…
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