The Story of hae day :-)
Ten years ago, the HAEA recognized the need for legislative action to promote national awareness aimed at ultimately improving the lives of people affected by an ultra-rare condition called Hereditary Angioedema (HAE).
The idea was to seek a legislative initiative to establish an enduring platform for a nationwide HAE awareness and education campaign. During our travels throughout the halls of Congress, we found a champion in the senior Senator from Hawaii, Daniel K. Inouye. He enthusiastically introduced Senate Resolution 286, which affirmed May 16th as hae day :-), and received a unanimous endorsement by the United States Senate.
On May 16th, 2012 and every year since, the HAEA community including people with HAE, caregivers, families, healthcare practitioners, scientists, and the pharmaceutical industry commemorates hae day :-) by organizing events that promote HAE awareness and educational activities.
The approval of Senate Resolution 286 also led to developing a variety of HAEA events that include HAE IN-MOTION® events, Meet & Greet programs, Youth Advocacy Programs, giving campaigns, and our annual Capitol Hill Day, among many others. We are also proud to report that hae day :-) is now celebrated by thousands of people around the globe, from the edge of Patagonia in Argentina to the islands of Japan.
hae day :-) also challenged us to advocate for better therapies and an improved quality of life. Today, we enjoy an unprecedented number of effective therapies, with eight FDA-approved products and thirteen more in development. We count on the momentum and the galvanizing force of hae day :-) to continue motivating the quest for new and better HAE treatments.
In 2022 for hae day :-) we Amplified the Voices of People with HAE!
We asked the HAE community to come together to share their personal stories to elevate and amplify rare voices for HAE health, and we provided storytelling tools to do it!
Together, we flooded social media with our stories on May 16th for hae day :-). Scroll down to read stories that were submitted in 2022.
Join Us in 2023!
Each year the HAEA hosts a nationwide hae day :-) event. Stay tuned to learn about how you can get involved in 2023!