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ViroPharma Launches 'HAE and Me,' A New Online Community to Unite People Living With Hereditary Angioedema
Date:3/21/2011

ritten profiles of people with HAE and physicians
  • Tips and advice from people with HAE and physicians
  • Quarterly physician spotlights
  • Monthly polls
  • Answers to frequently asked questions about HAE
  • Upcoming events

  • "Gen HAE," which was developed with input from teens and young adults living with HAE, focuses specifically on the important issues young people growing up with chronic conditions like HAE may face.  Unique to "Gen HAE," visitors can also submit questions to Dr. Miriam Kaufman, a pediatrician who has worked for 27 years with young people who have chronic conditions.  

    Information on "HAE and Me" will be regularly updated to include new information and interactive elements, potentially including an interactive map to visually link HAE patients, and a calendar of relevant events around the country.  "HAE and Me" will also expand to include targeted content for other sub-communities of people affected by HAE, such as parents or caregivers.

    About Hereditary Angioedema

    HAE is a rare, severely debilitating, life-threatening genetic disorder caused by a deficiency of C1 inhibitor, a human plasma protein. This condition is the result of a defect in the gene controlling the synthesis of C1 inhibitor. C1 inhibitor maintains the natural regulation of the contact, complement, and fibrinolytic systems, that when left unregulated, can initiate or perpetuate an attack by consuming the already low levels of endogenous C1 inhibitor in HAE patients. Patients with C1 inhibitor deficiency experience recurrent, unpredictable, debilitating, and potentially life threatening attacks of inflammation affecting the larynx, abdomen, face, extremities and urogenital tract. Patients with HAE experience approximately 20 to 100 days of incapacitation per year. There are estimated to be at least 6,500 people with HAE in the United States.

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    SOURCE ViroPharma Incorporated
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