Cure HHT Uses Awareness Month to Significantly Raise Visibility for Debilitating Rare Disease
MONKTON, Md. (PRWEB) May 31, 2018 -- Ninety percent of people with the rare disease Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome, are undiagnosed. The genetic disorder of the blood vessels affects 1 in 5,000 people worldwide and a diagnosis means there is a whole family of potentially affected people. Raising awareness is key to increasing diagnosis and treatment. Cure HHT is the only international patient advocacy organization focused solely on HHT patients and their families. In the past year, the visibility of HHT has been raised with international conferences, legislative efforts, training of health care professionals and more. A new website was also launched which has become the portal for everything related to HHT. http://www.CureHHT.org.
Hereditary Hemorrhagic Telangiectasia (HHT) is a cruel and unrelenting disease, affecting families for generations. While it can have seemingly mild symptoms like frequent nosebleeds, or no symptoms at all, it can result in disabling and catastrophic events. It is often a severe event that leads to a diagnosis and HHT can affect members of the same family differently. Knowing the signs and symptoms can help lead to a faster diagnosis.
This hereditary disorder creates abnormalities in the blood vessels; they are fragile and thus susceptible to rupture and bleeding, which can result in lung and brain hemorrhage, stroke, and death. HHT, like ALS, is a rare disease, but it receives far less research grants and is often misdiagnosed. Cure HHT is building awareness, unifying the HHT community, educating the public, and advocating for patients and families all around the world.
In the past year, Cure HHT has hosted an international conference in Dubrovnik, Croatia and two regional conferences in Scottsdale, AZ and Nashville, TN. The scientific conference in Dubrovnik served 200 medical professionals in the clinician and research fields from over 23 countries. Every two years scientists from around the world gather to discuss the latest advances in HHT research. These meetings lead to international scientific collaboration that accelerates progress in HHT research, treatment, and extending patient access to expert care. The next scientific conference will be held in June 2019. The regional conferences brought together patients, families, and health care professionals in a smaller setting that fosters engagement and a third one is planned for Ann Arbor, MI this fall.
Since 2003, Cure HHT has leveraged $24 million in research grants from the DOD, National Institute of Health, the FDA, and the CDC. With the release of the new website and upcoming app Cure HHT continues to expand their reach through traditional and online media. With the new IOS app, patients will be able to track nosebleeds, appointments, test results, confer with HHT Doctors and more.
In celebration of Awareness Month Cure HHT invites all to “Step Out” and “Step Up The Fight” with events and fundraisers. Walks and family days will be held across the country and there will be a number of ways to get involved on an international level for June 23, Global Awareness Day. Visit https://curehht.org/get-involved/raise-awareness/ for more information.
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## Editor’s Notes
- Interviews are available with Cure HHT Staff
- More information available upon request
Marisa Maccia, Cure HHT, http://curehht.org, +1 (617) 363-0405, [email protected]
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