All four boys in the Otsuka family have inherited HHT.

“A critical part of our work has been raising the awareness of HHT, not just with the public, but with physicians worldwide. When we started, HHT was frequently misdiagnosed, often with tragic consequences,” comments Cure HHT Executive Director Marianne S. Clancy.

MONKTON, Md. (PRWEB)
June 07, 2021

Cure HHT, a non-profit organization headquartered in Maryland, is the only patient advocacy organization in the world funding research, awareness and education for HHT patients, their families and the medical/scientific community. HHT (Hereditary Hemorrhagic Telangiectasia) is the second most common bleeding disorder, affecting an estimated 1.4 million people of all races and backgrounds globally. HHT affects 1 in 5,000 people, and is as common as Cystic Fibrosis, yet it is far less known and receives less funding for research.

HHT creates abnormalities in blood vessels, called telangiectasias, which are fragile and susceptible to rupture and bleeding, and untreated may result in lung and brain hemorrhage, stroke, heart failure and death. The most common symptom of HHT is frequent and severe nose bleeds, often dismissed. One HHT diagnosis means there is a whole family of potentially affected people spanning generations. There is, as yet, no cure, but existing treatments can be effective if HHT is diagnosed early. Importantly, 90% of those with HHT are unaware that they have the disease. http://www.curehht.org

Cure HHT was founded in 1991 by a tenacious and dedicated group of patient families and physicians who recognized the need to dramatically increase the awareness, access to quality care, and funding for research for HHT.

“A critical part of our work has been raising the awareness of HHT, not just with the public, but with physicians worldwide. When we started, HHT was frequently misdiagnosed, often with tragic consequences,” comments Cure HHT Executive Director Marianne S. Clancy. In 1991 the organization created its first HHT Center of Excellence at Yale University School of Medicine. “It is a testament to our 30th anniversary that when we open our newest HHT Centers of Excellence in 2021 in Alabama, Arizona and Florida we will have a total of 30 Centers of Excellence in North America, and more to come.”

The organization is actively involved in advocacy at the national level, and has helped leverage over $50 million in research grants for scientists from the National Institutes of Health (NIH), the Department of Defense (DOD), the Food and Drug Administration (FDA) and other sources.

One promising clinical study currently underway is called PATH (Pomalidomide for the Treatment of Bleeding in HHT). This study is exploring the use of an oral medication called pomalidomide for those with moderate to severe nosebleeds requiring iron infusions or blood transfusions. PATH is funded by a grant from the National Heart, Lung and Blood Institute (NHLB). Recruitment is ongoing and takes place at 10 HHT research centers across the United States. A study of this scale would never have been possible without the creation of this research network of HHT Centers of Excellence.

In 2009, Cure HHT secured the passage of a resolution in the United States Congress declaring June as National HHT Awareness Month. Throughout the month of June, and especially on Global Awareness Day June 23rd, Cure HHT encourages wider Awareness of the disease so that more people will be diagnosed in a timely way, and receive treatment before their situation becomes dire. Cure HHT Awareness campaigns have resulted in major coverage of the disease in The New York Times and The Washington Post; the launch of the new Cure HHT comprehensive website; and the first worldwide virtual walk, Strides For Strength.

In 2019 the organization facilitated the Christopher McMahon Memorial International HHT Guidelines Conference that established new international standards for screenings, diagnosis and treatment, and the publication of the resulting Guidelines in the Annals of Internal Medicine reaching thousands of health care providers worldwide, advancing the organization’s goal of educating medical professionals. Cure HHT also hosts the only international scientific conference biennially. Last held in 2019 in Puerto Rico the conference brought together over 200 scientists, medical professionals and patients from 21 countries and 6 continents.

“Today Cure HHT is the cornerstone of a global movement, and we continue to expand and build our capacity,” Clancy adds. “Cure HHT was selected as one of only 30 organizations to participate in the Chan Zuckerberg Initiative’s (CZI) Rare As One Network, providing funding, tools, expansion support, and training to create a larger, more integrated HHT community. As we celebrate the launch of our 30th year during Awareness Month 2021, the momentum is with us to drive towards a cure for this disease.”

On Global Awareness Day, June 23, 2021, Cure HHT will host a 30th Anniversary Virtual Kick-Off event to celebrate its successes and honor some of the leading champions and volunteers who have brought the organization from its 1991 beginnings to its current status as the world’s leading organization in the fight against HHT. The event is complimentary and open to the public, with registration at http://www.curehht.org/celebrate30

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