In 1999, a group of people affected by HAE banded together to form the HAEA based on a shared vision to help alleviate the pain, suffering, and high mortality rate of this catastrophic unmet medical need.
The US HAEA is a 8,000+ member strong organization that is more committed than ever to our enduring fundamental principle - helping everyone with HAE lead a happy, healthy, and fulfilling life.
Eight therapies for treating HAE are currently approved by the FDA providing options for developing an HAE treatment plan tailored to meet each person's unique needs.
Since 1999, the US HAEA has hosted 13 national and regional conferences and summits to unite people with HAE, caregivers, healthcare professionals, and industry partners for a transformative experience of learning and sharing.
In 2012, Senate Resolution 286, introduced by Senator Daniel K. Inouye, established May 16th as hae day :-), a day dedicated to promoting HAE awareness and education. Since then, the HAE community has participated in annual awareness events and campaigns to celebrate this commemorative day.
In 2015, we launched the HAEA Pam King Scholarship Program. Through this program, the HAEA has given more than 500 scholarships to students with HAE seeking to improve their lives through academic achievement.
The successful Brady Club program that connects the youngest members of our community launched in 2015. To date, we have mailed out over 5,000 educational activity books to children living in the United States. Brady Club International currently collaborates with HAEi to distribute these resources to children in 23 countries worldwide.
Over 5,000 HAEA friends stepped it up for HAE and raised awareness during the HAE IN-MOTION® events since 2017.
In 2017, we launched the empowering Youth Leadership Programs, including the HAEA Social Media Internship and Youth Leadership Council. These programs provide professional development, advocacy training, and leadership opportunities to advocate for our community.
In 2019, we broadcasted the first youth-produced podcast, #BeyondHAE with 55 episodes played in 68 countries around the world.
In 2019, we launched a unique HAEA Children's Book Series about a little boy, Nico, who is learning to navigate life with HAE. We've donated over 2,000 books to families, HAE treating physicians, libraries, and community events.
969 constituents are currently registered in the Grassroots Advocacy Network in 2023. The Grassroots Advocacy Network is a group of volunteers dedicated to supporting people with HAE through active participation in public policy issues.
In 2022, we released a Guide for Women with HAE, to help women and young girls with HAE navigate three specific life stages: pediatrics and puberty; family planning and pregnancy; and, menopause and aging. To date, over 1,600 guidebooks have been distributed to women in the United States.
The HAEA Round Table allows people with HAE facing different challenges to spread awareness and foster community connection. The HAEA Round Table videos have hosted over 25,000 viewers since the first video was produced in 2022.
Since its launch in January 2022, the HAEA Community Blog has shared 24 articles from HAE community members, allowing them to share their own experiences in their own words. The blog is a space to amplify our voices through our collective experiences, reflections, and perspectives.
There have been over 130,000 views on our HAEA Treatment Education Series Webinars and Webinar Briefs, which educate viewers and raise awareness worldwide.
Since 2021, over 460 letters to members of Congress have been sent by members of the HAEA Grassroots Advocacy Network to advocate for a variety of issues such as the Safe Step Act, Marketplace Insurance Act, HELP Copays Act, and more.
In 2021, we developed an Insurance Guidebook to assist HAEA members with the complicated process of insurance denials and appeals. Over 130 copies have been distributed to people with HAE in need.;
Since 2015, the HAEA has assisted with over 750 insurance appeals to ensure that all members of the HAEA community receive the lifesaving HAE treatments they need.
The HAEA has compiled a database of over 1500 expert HAE physicians around all parts of the United States. We provide physician referrals to HAE community members in need of diagnosis or expert care.
The HAEA developed an ER Toolkit to ensure that critical, potentially life-saving information on HAE could be seen by emergency care staff. Since the firstER Toolkit was printed in 2017, over 10,000 copies have been distributed to hospitals, EMTs, and healthcare professionals around the country.
Since 1999, we have recruited people with HAE to participate in over 20 clinical trials to encourage the approval of vital HAE therapies.
Over 450Cares Kits, have been mailed to children, teens, and young adults to help them cope with their HAE diagnosis.
Through countless congressional meetings and over a dozen Capitol Hill days, the HAEA community has advocated for initiatives focusing on funding for medical research as well as coverage and access for HAE treatments. Four of the initiatives that the HAEA advocated for were recently enacted including the Medicare Part D Out of Pocket Cap and Suprise Medical Billing.
HAEA Meet and Greets have created both virtual and in-person opportunities for HAEA members to learn about programs and research, connect with their local communities, and share their experiences to build support networks. We have held 60 events and welcomed close to 1,000 community members.
