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COPENHAGEN –May 16, 2012—Today, advocacy organizations in 36 countries around the world have united to improve awareness of hereditary angioedema (HAE), a rare and potentially life-threatening swelling disorder, by supporting hae day :-) in their communities. Initiated by the HAEi – International Patient Organization for C1-Inhibitor Deficiencies – hae day :-) is the first global awareness day to raise awareness of HAE among the general public and medical community. The goal is to create an environment in which there is better care, earlier and more accurate diagnosis and knowledge that HAE patients can lead a healthy life.
For the past four months, supporters have been organizing education and awareness activities all over the world – from Frankfurt, Germany to Honolulu, USA via Veracruz, Mexico. Events include a presentation about HAE, a raffle, a Walk-a-Thon, a fundraising card game and a mass photo shoot. Through its website, haeday.org, more than 400 people from nearly every continent shared a virtual smile in support of HAE awareness. The first hae day :-) culminates tomorrow when people with HAE, care givers, health care professionals and industry representatives attend the 2012 HAE Global Conference in Copenhagen, the first truly global meeting of the HAE community.Read full article