Cure HHT Foundation dedicated to spreading awareness about rare blood disorder.
+ Technology/Innovation
Jamie Barrand | Dec 31, 2015

Cure HHT Foundation dedicated to spreading awareness about rare blood disorder

Hereditary hemorrhagic telangiectasia (HHT), also known as Osler Weber Rendu syndrome, is a rare, inherited disorder of the blood vessels that is marked by directly connected arteries and veins and the absence of capillaries.

Those with HHT may also experience dilation of small blood vessels.

These abnormalities can be found throughout the patient's body -- in the nose, mouth, lips, fingers and toes or in organs such as the brain, liver and lungs.

Research, treatment and awareness of the disease is supported by the Cure HHT Foundation, a national nonprofit organization, which also provides patients, health care providers and caregivers with educational materials.

HHT affects about 1.4 million people. Cure HHT's staff and volunteers are dedicated to getting information out about the disease. They recently launched a new webinar series. The organization also hosts an HHT Family and Patient Conference twice a year; the weekend-long event offers workshops and seminars.

Lack of awareness continues to be a stumbling block for those trying to promote HHT research and treatment. It is estimated that one of every 5,000 people have HHT, but that only 10 percent of those cases are actually diagnosed.

For more information about HHT or how to organize local fundraising events, visit www.curehht.org.

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