June HHT Global Awareness Month Highlights COVID-19 Risk for Those With Rare Genetic Disease: As Many AS 90% Unaware They Have HHT

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Cure HHT, the only patient advocacy organization in the world funding research, awareness and education for the rare genetic disease HHT for patients, their families and the medical/scientific community issues COVID-19 cautions to HHT Patients, and works to increase Awareness of HHT for Global Awareness Day June 23rd 2020.

Cure HHT, the only patient advocacy organization in the world funding research, awareness and education for the rare genetic disease HHT for patients, their families and the medical/scientific community issues COVID-19 cautions to HHT Patients, and works to increase Awareness of HHT for Global Awareness Day June 23rd 2020.

Most Common Symptom is Frequent Nose Bleeds

Ninety percent of people with HHT (Hereditary Hemorrhagic Telangiectasia) are unaware they have the rare disease that affects an estimated 1.4 million people of all races and backgrounds globally. This genetic disorder of the blood vessels affects 1 in 5,000 people, and is as common as Cystic Fibrosis, yet receives far 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.

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. Since its first HHT Center of Excellence was opened at the Yale University School of Medicine in 1991, Cure HHT has dramatically expanded awareness, diagnosis and access to quality healthcare for HHT patients, and now has 26 Centers of Excellence operating in the United States and Canada headed by leading HHT physicians and specialists. https://curehht.org

HHT’s blood vessel abnormalities, especially in the lungs, pose an added risk for individuals affected by COVID-19. It can also impact those HHT patients receiving medications that increase the risk for blood clot formation complications, referred to as COVID coagulopathy, with an incidence reported to be as high as 27%.

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. “This is a huge part of our mission,” comments Cure HHT Executive Director, Marianne S. Clancy. “Awareness of HHT is the basis of everything that we do. It is critical to alerting hundreds of thousands of people globally that they may have this disease, and may be passing it on to their children. From that Awareness comes increased diagnosis, improved treatments and more funding for research to find a cure.”

In addition to hosting the only international scientific conferences on HHT, Cure HHT provides seed grants for research, education for health care professionals, and advocacy for increased funding which it has helped leverage through the CDC (Centers for Disease Control), the NIH (National Institutes of Health, the DOD (Department of Defense) and other sources.

This year, Cure HHT received a two-year capacity-building grant from the Chan-Zuckerberg Initiatives’ Rare As One Project to develop a patient-led research network, which will accelerate its mission to find new treatments and a cure for the disease. Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, CZI is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges.

Also, Cure HHT has launched an expanded and revamped online Resource Library which is a free, centralized hub for patient and medical provider information. The user-friendly Resource Library offers separate gateways for Patients and Providers, and facilitates the search for critical information with a “Quick Topic Access” button leading viewers to information on a wide range of topics including genetics, mental health, pregnancy and women’s issues, and the impact of the disease on the brain, heart, liver, lungs and more. Users can seamlessly navigate between topic areas, or use the improved search to locate the specific information they are seeking. It is the most comprehensive free online source of information on HHT in the world.

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