Useful Links to Outside Organizations
Links to outside medical and government organizations that provide information useful for HHT patients.
Related Resources
Your Questions Answered: An Informative Session on an HHT Clinical Trial (Recorded)
Webinar – 2025An informative webinar about hereditary hemorrhagic telangiectasia (HHT). The webinar is being run by Cure HHT and introduces an upcoming clinical trial evaluating whether an investigational medication has the potential to treat HHT. During this sess…
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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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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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Upcoming Webinar: Town Hall: Cure HHT Center of Excellence Program Updates Tuesday, June 16 | 1:00-2:00pm ET Cure HHT is committed to improving care, supporting providers, and helping ensure…
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