Useful Links to Outside Organizations
Links to outside medical and government organizations that provide information useful for HHT patients.
Related Resources
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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Ronald McDonald House
Organization – 2020Do 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 around the world offer families a way to stay together, in proximity to the treatment hospital,…
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Genetic and Rare Diseases Information Center
Organization – 2020Looking for current, reliable and easy to understand information about rare or genetic diseases? Contact GARD Information Specialist. Affiliated with the National Institutes of Health (NIH), the Genetic and Rare Diseases Information Center (GARD) is…
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National Organization for Rare Disorders (NORD)
Organization – 2020Cure HHT partners with NORD to empower the rare disease community. NORD maintains a Rare Disease Database, Rare Action Network, Patient Assistance Program, and Physician Guides. NORD organizes Rare Disease Day, the international advocacy day to bring…
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American Society of Hematology – Physician Resources
Organization – 2020Have questions about anemia? The American Society of Hematology has the answers. The American Society of Hematology (ASH) is committed to helping practicing hematologists provide quality care to patients, continue their professional development, and…
MoreAmerican Society of Hematology – Patient Resources
Organization – 2020Have questions about anemia? The American Society of Hematology has the answers. The American Society of Hematology has developed resources for the patient section of their website to educate the public about the importance of healthy blood and to ra…
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Clot Connect
Organization – 2020Clot 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 knowledge of blood clots, clotting disorders and anticoagulation by providing education and…
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Anatomy Gifts Registry
Organization – 2020Tissue or whole body donation allows advancements in research that aren’t possible using animal or artificial models. The mission of AGR’s caring & compassionate non-profit program is to provide expertly prepared anatomical gifts to scientists, c…
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Pulmonary Hypertension Association
Organization – 2020The Pulmonary Hypertension Association (PHA) is a 501(c) organization non-profit support, education, advocacy and awareness association for pulmonary hypertension (PH). It provides information to the public about the illness and acts as a support gro…
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Do you live near San Francisco? We have an event for you! HHT Kids Day, co-hosted by UCSF HHT Center of Excellence and Cure HHT at the California Academy of Sciences Museum promises to be an amazing d…
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