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Rare Disease Patients Gather for Global Conference in Washington D.C
“Hereditary angioedema – also known as HAE – is a rare genetic disorder that causes swelling to various parts of the body. These swelling of the skin, which doctors call ‘edema’, occur mainly in the face, although the extremities and genitals are often affected. Swelling of the internal organs, specifically the mucous membranes of the larynx, nose or tongue, is potentially life threatening as it can cause death by suffocation. More than 50 per cent of HAE patients will experience at least one attack of this type in their lifetime”, explains Mr. Anthony J. Castaldo, President of HAEi, the international patient organization behind the conference.
HAE places extraordinary strain on patients, often restricting their ability to lead normal lives. Untreated HAE patients can lose 100 to 150 workdays per year, if not more. Currently there is no cure for HAE, but treatment options are available to prevent attacks from occurring or to treat attacks when they do occur.
HAE affects between one in 10,000 and one in 50,000 people worldwide. However, delays in diagnosis are common in patients with HAE and therefore far from all patients have been diagnosed yet. The average time between the onset of symptoms and the diagnosis was 22 years as of 1977 and was still more than 10 years as of 2005. The numbers are slightly better by now but there is still a long way to go.
“With a focus on ‘Setting New Standards’, the HAE Global Conference provides HAE advocates from all over the globe with an opportunity to assess the state of HAE care in their countries and interact and collaborate with colleagues to design strategies for making improvements. The active participation of the delegates will lead to invaluable interactions between patients, the scientific and medical community as well as pharmaceutical industry”, says Mr. Henrik Balle Boysen, Executive Director of HAEi.
“The conference is designed to serve as an incubator for developing creative collaborations and innovative approaches to improving HAE care in the respective countries. Hopefully, every patient will be inspired by what they learn during the conference and will translate that knowledge and motivation into systematic action aimed at improving diagnosis and access to life saving HAE therapies.”
The HAE Global Conference is indeed the largest worldwide gathering of HAE patients that has ever been organized, breaking the record established at the inaugural worldwide conference in Copenhagen, Denmark in 2012. This year attendees are representing Argentina, Australia, Austria, Belarus, Brazil, Canada, China, Czech Republic, Denmark, Finland, France, Germany, Hungary, Ireland, Israel, Italy, Japan, Macedonia, Malaysia, Mexico, Netherlands, New Zealand, Norway, Pakistan, Poland, Portugal, Romania, Russia, Spain, Sweden, Switzerland, United Arab Emirates, United Kingdom, Venezuela, and obviously the United States of America.
HAEi is a global non-profit umbrella organization dedicated to working with its network of national HAE patient organizations to raise awareness of HAE. HAEi is currently represented in 37 countries worldwide.
“HAEi is established to promote co-operation, co-ordination and information sharing between HAE specialists and national HAE patient associations in order to help facilitate the availability of effective diagnosis and management of C1 inhibitor deficiencies throughout the world. Our purpose is to join the efforts and experience of the global HAE community to achieve optimal standards of care and treatment for all those patients affected by C1 inhibitor deficiencies”
As part of its activities HAEi organize the global awareness day hae day :-) taking place each year on 16 May 2014.
Read more about HAE and HAEi on www.haei.org.