Cure HHT Foundation dedicated to spreading awareness about rare blood disorder
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.
Organizations in this story
National Organization for Rare Disorders (NORD) 55 Kenosia Avenue Danbury, CT 06810