Hereditary angioedema or HAE is a debilitating and potentially life-threatening genetic disease characterised by unpredictable recurring swelling attacks in the hands, feet, face and abdomen. Attacks that affect the larynx are life-threatening because they constrict the upper airways and can lead to death by suffocation. Experts estimate that between 1:10,000 and 1:50,000 people suffer from HAE. According to HAE expert Dr. Hilary Longhurst from St Bartholomew’s Hospital London about 1,200 patients in UK are affected by HAE, most of whom are undiagnosed.
“HAE-Network.info is a great source of accurate, up-to-date information” says Hilary Longhurst. “I particularly appreciate the reference service. This will save physicians at my hospital many frustrating hours searching for full-text documents in the library.” In addition to the services for doctors, the new portal also offers patients a wide range of services and networking opportunities, including a search function to find HAE expert centres at home or in other European countries when travelling, a meeting calendar for patient conferences and access to all contact data, answers to frequently asked questions and direct access to websites of national and international patients’ organisations.
HAE-Network.info facilitates national and international networking between physicians, scientists, patients and relatives’ caretakers. As a forum for continuous dialog the HAE-Network.info collects current knowledge and experience on HAE, with the aim of raising awareness and disseminating comprehensive information about hereditary angioedema. The website is sponsored and maintained by Jerini AG, Berlin/Germany.
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