May 16 is HAE Day: Spreading Rare Disease Awareness

May 16 is recognized each year as HAE Day, a day dedicated to spreading awareness among the general public and the medical community about hereditary angioedema (HAE), a rare disease. This year will be the tenth anniversary of HAE Day, and HAE International, a global nonprofit organization, has organized its Lets Take the Next Step global virtual walk event to help people get involved.

About Hereditary Angioedema (HAE)

HAE is a genetic disorder which is characterized by chronic episodes of swelling that can affect multiple areas of the body. The condition is caused by mutations affecting the SERPING1 gene. Swelling attacks generally occur every two weeks or so; they can usually last for several days. Swelling may affect the limbs, digestive tract, face, and airway, with blockage of the airway being the most dangerous complication. Vomiting and abdominal pain may accompany attacks as well if the digestive tract is involved. Treatment involves reducing the likelihood for attacks to appear and preventing them from worsening when they do. The disorder is typically only life-threatening if left untreated. Prevalence of the condition is estimated to be around one in 10,000 to one in 50,000, at least in the US and Canada. To learn more about HAE, click here.

Lets Take the Next Step

The Lets Take the Next Step is a virtual awareness walk that is taking place on a global scale. With the goal of tracing a path around the entire world, people that are interested in participating can record their time each day that they spend on exercise and wellbeing on the HAE Day website, which can be found here. Visitors to the site can learn more about the community in different regions of the world and see how many others have gotten involved.

The site also has a list of global events that can be found here. There are also other resources that can allow you to spread awareness about HAE in other ways too, such as a press release template, an email template to contact the community in your country, and tips on how to utilize social media.

So what are you waiting for? Don’t miss out on this chance to help the HAE community.

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