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Get Involved With The Annual HAE Day :-)

March 3, 2013

May 16 every year is global awareness day for Hereditary Angioedema (HAE). The purpose is to “raise awareness of HAE among the general public and medical community, with the aim of creating an environment in which there is better care, earlier and more accurate diagnosis, and knowledge that HAE patients can lead a healthy life.” The day is started by the HAEi organization, the International Patient Organization for C1 Inhibitor Deficiency, along with its National Member Organizations. The purpose of the Day  is to:

• Support better care and an earlier & more accurate diagnosis
• Engage the general public & the medical community
• Raise funds for further national & international initiatives
• Strengthen the voice of patients, uniting HAE patient organizations globally.

HAE Facts

  1. Rare, potentially life threatening inherited disorder
  2. Defect in the gene that controls a blood protein, C1-inhibitor, which results in the production of either inadequate or nonfunctioning C1-inhibitor proteins. This can result in a biochemical imbalance that induces the capillaries to release fluids into surrounding tissues, causing swelling (edema)
  3. If a parent has HAE, their child has a 50% chance of inheriting the disorder
  4. Symptoms are severe, painful, and recurring attacks of edema that affect various body parts & can be disfiguring
  5. Untreated, an average attack lasts for 24 – 72 hours
  6. Affects between 1/10,000 – 1/50,000 people worldwide.

References

2013 US HAEA National Patient Summit – September 27 – 28, 2013, Orlando, Florida

Blog Post “Hereditary Angioedema Orphan Drug Market And 2013 Business Developments”

Blog Post “Social Media Tools, SmartPhone Apps, And Online Communities: Hereditary Angioedema (HAE)”

Farkas, Henriette. Orphan drugs for the treatment of hereditary angioedema. Expert Opinion on Orphan Drugs. 20131:2, 141-156.

Please Note: The HAE Day ‘:-)’ Logo is available for download.

Copyright © 2012-2013, Orphan Druganaut Blog. All rights reserved.

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