PHOENIX (PRWEB)
August 02, 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

Now celebrating its 30th anniversary, Cure HHT is proud to announce that it has named Barrow Neurological Institute (Barrow) in Phoenix, Arizona, as its 30th Center of Excellence (CoE) in North America, and the only such CoE in Arizona. Cure HHT recognizes CoEs that are equipped with the personnel, expertise, commitment and resources to provide comprehensive evaluation, treatment and education to individuals with HHT and their families. Designation as a CoE follows 18 months of training, mentoring and site visits.

The Barrow HHT Program, in collaboration with Arizona Pulmonary Specialists, at Barrow Neurological Institute works in partnership with Dignity Health to provide patients with an integrated team of specialists who work together within one health care system.

“Barrow and Arizona Pulmonary Specialists have a track record of delivering excellence,” said Jeremy Feldman, MD, a pulmonary specialist, and Director of the Barrow HHT Center, who partners with Barrow physicians to treat HHT. “HHT is a complicated lifelong genetic disease with manifestations that cross multiple organs and multiple specialties. The Barrow HHT Program allows us to bring together pulmonary; ear, nose, and throat; gastrointestinal; interventional radiology; and neurosurgery experts to care for these patients.”

“It’s exciting for Cure HHT to be naming our 30th Center of Excellence in our 30th anniversary year,” states Marianne S. Clancy, Executive Director of Cure HHT. “We have come a long way since our founding in 1991 by a passionate group of doctors and volunteers dedicated to making HHT better known, especially by the medical community.”

In 1991 the organization created its first HHT Center of Excellence at Yale University School of Medicine. Clancy adds: “We continue to create new centers nationwide. With such a rare and often misdiagnosed disease, at an HHT center, specialists work with HHT on a daily basis and they know the signs and the symptoms as well as the latest treatments.”

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 comments. “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 our 30th year, the momentum is with us to drive towards a cure for this disease.”

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Editor’s Notes:

• Interviews are available with The Barrow HHT Program, and HHT centers throughout the United States and Canada with patients and medical professionals.- See a list of locations, here: https://directory.curehht.org/hht-centers

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