The History of hae day :-)

On May 16th, 2012 and every year since, people with HAE, caregivers, families, healthcare practitioners, scientists, and the pharmaceutical industry commemorate hae day :-). This special day of action includes HAE awareness and educational activities. Also, hae day :-) serves as a rallying point for sustaining the dedication of a truly unique group that has achieved something unprecedented for an ultra rare condition: 8 FDA approved medicines with 13 in various stages of development.

The HAEA community always recognized the need for federal legislative action to promote national awareness aimed at improving the lives of people with HAE. In the fall of 2011, the HAEA community participated in an outreach campaign seeking an elected representative who would champion our cause. National in its scope, this effort proved successful when the Senior senator from Hawaii (and then President Pro Tempore of the Senate) Daniel K. Inouye agreed to sponsor legislation designating a national day of HAE awareness. Known as an able negotiator and alliance builder, Senator Inouye used his skills to gain support from his colleagues before sending Resolution 286 to the floor of the United States Senate on Tuesday, January 31st, 2012. The Resolution received bi-partisan support with unanimous approval for establishing May 16th as hae day :-).

Every year on May 16th, the HAEA community raises awareness by hosting fundraisers, distributing educational materials such as the HAEA ER Toolkit, and/or sharing personal stories on social media platforms. In addition, the success in engaging Congress led to our annual Capitol Hill Day, a popular and well attended event that provides opportunities for us to engage and inform our elected representatives.

We look forward to you joining the community and participating in celebrating hae day :-) 2022.

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