May 16th is Hereditary Angioedema Day : Spreading Rare Disease Awareness

May 16th is celebrated annually as Hereditary Angioedema (HAE) Awareness Day. The event was established with the goal of spreading awareness about this rare condition among both the general public and the broader medical community. Awareness is essential for proper care and diagnosis for patients living with rare diseases like hereditary angioedema. This year, HAE International, a nonprofit patient support organization, has organized an HAE Global Walk to help raise awareness.

About Hereditary Angioedema (HAE)

Hereditary angioedema 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. Hereditary angioedema 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 hereditary angioedema, click here.

About the HAE Global Walk

While under normal circumstances HAE International encourages participants to gather in groups for the walk and foster interaction with other community members, the organization is asking people to practice physical distancing while participating due to the coronavirus pandemic. 

Getting involved in the HAE Global Walk is simple. All you need to do is walk any distance you want from wherever you are.  Record the distance that you walked and then enter it into the form (in either miles or kilometers) found here at the bottom of the webpage. The HAE Global Walk runs from April 1, 2020 to May 31, 2020.

Are you interested in learning more about Hereditary Angioedema Awareness Day and getting more involved? Check out the HAE Day toolbox and other resources here.

To learn more about the activities of HAE International, click here.

Patient Worthy is partnering with a company that is looking for HAE patients for a compensated opportunity. To learn more, click here.

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