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.
And so, on hae day :-) we celebrate all that our community has achieved, the unsung heroes who worked to make hae day :-) a reality, and the memory of Senator Inouye, who championed our cause.
Let's Amplify the Voices of People with HAE!
Each of you have compelling stories about what it's like to live with HAE. Your life experiences can teach others about the HAE community's challenges and opportunities to achieve greater health and quality of life. We are asking you to share your personal stories to elevate and amplify our voices for HAE health, and we are providing you with storytelling tools to do it! Whether you prefer to present in written or video formats, we can’t wait to hear from you.
We want to flood social media with our stories on May 16th for hae day :-).
When you pledge your participation, we will send you everything you need to create a memorable story to share with your personal networks on hae day :-) 2022.