Patient Resources

PATIENT RESOURCES

Advocate Health Care – Based in Oak Brook, Illinois, Advocate Health Care is a faith-based, not-for-profit health system.  It is the largest health care provider in Illinois and also is recognized as one of the top 25 integrated health care systems in the country.

American Society of Hematology - Blood: The Vital Connection is a consumer campaign designed to educate the public about the importance of healthy blood. Developed by the American Society of Hematology (ASH), the campaign aims to raise awareness about the most common blood diseases, such as anemia, bleeding and clotting disorders, and blood cancers.

Anemia / Iron Deficiency – National Anemia Action Council (NAAC) - a non-profit organization dedicated to raising awareness of healthcare professionals and the public regarding the prevalence, symptoms, consequences, and treatment options of anemia. In addition, for the HHT patient they have information on the importance of iron, suggested iron-rich foods, maximizing the body’s iron absorption as well as a patient’s guide to oral iron supplements. For the medical professionals, they provide a guide to oral iron supplements, and educational slide set, and an Ask the Expert resource.

Clinical and Scientific Review of HHT - An article published in the European Journal Of Human Genetics that provides a full clinical and scientific review of HHT.

Clot Connect Website - An education and outreach project of the University of North Carolina at Chapel Hill Blood Clot Outreach Program in the Hemophilia and Thrombosis Center. Clot Connect's mission is to increase knowledge of blood clots,  clotting disorders and anticoagulation by providing education and support resources for patients and health care professionals.

Deborah’s Heart and Lung Center – Located in Browning Hills, NJ, Deborah’s Heart and Lung Center offers the latest surgical techniques and non-surgical alternatives for diagnosing and treating all forms of cardiac, vascular and pulmonary diseases in adults, congenital and acquired heart defects in adults and children.

Epistaxis (Nosebleed) Severity Scoring Tool (ESS) - This online tool will prompt you to complete several questions concerning your nosebleed experience.  Your severity score can help your doctors evaluate the most effective treatment for your nosebleeds.

Families USA - Families USA is a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health care for all Americans.

Genetic Alliance - Genetic Alliance is a national, nonprofit health advocacy organization based in Washington, DC committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. When GINA was signed into law, the Alliance chaired the Coalition for Genetic Fairness, a multi-stakeholder coalition of over 500 organizations committed to passing federal genetic nondiscrimination legislation.

Genetic Testing / Genetic Testing Labs

HHT Clinical Guidelines – Journal of Medical Genetics

HHT Patient Support Groups - International / North America

HOTELS affiliated with HHT Centers of Excellence

University of Pennsylvania   (Philadelphia)

University of Texas - Southwestern   (Dallas)

Washington University   (St. Louis)

HavenHouse – St. Louis – Conveniently located in West County; HavenHouse sits on 19 acres owned by YouthBridge Community foundation.  Its mission is to provide the comfort of home and a community of support for families traveling to St. Louis.  HavenHouse exists because St. Louis is a hub of technological advances in medicine, and draws people worldwide for its excellence in medical care.

National Organization of Vascular Anomalies – NOVA is a patient support, advocacy and educational agency for those affected by hemangioma, vascular malformation, rare benign tumors and many related syndromes.

Patient Advocate Foundation – A Foundation that seeks to empower patients to take control of their health care.  Case managers work with patients to discover local, state, and federal programs that provide assistance for their individual needs.

Partnership for Caring - A program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation.

Quick Facts about HHT - for your physician(s) and family members

The Ronald McDonald House - Ronald McDonald Houses around the world offer families a way to stay together, in proximity to the treatment hospital, and be comfortable and cared for during their stay. 

Tissue Donation – National Disease Research Interchange – This interchange is designed to serve scientists with customized biomaterials for use in studies to understand human disease. Human cells, tissues, and organs are required to investigate how human disease progresses and to develop new drugs and therapies for treatments and cures.

Remote Area Medical – A nonprofit, volunteer, airborne relief corps dedicated to serving mankind by providing free health care, dental care, eye care, veterinary services, and technical and educational assistance to people in remote areas of the United States and the world.  Founded in 1985, Remote Area Medical is a publicly supported all-volunteer charitable organization.