??? Watch the HAEA Welcome to Congress Webinar now! Learn about this year’s legislative agenda, how to connect with fellow advocates, and how to use your voice to make a difference. ?? Watch the Webinar HERE: https://lnkd.in/eS4bAcJW #HAEA #HAE #HereditaryAngioedema #Advocacy #HAEAdvocacy #LegislativeAdvocacy #RareDiseaseAdvocacy #YourVoiceMatters
Hereditary Angioedema Association - HAEA
非盈利组织
Fairfax，Virginia 1,644 位关注者
The US HAEA is a non-profit advocacy and research organization serving people with Hereditary Angioedema (HAE).
关于我们
The HAEA is an advocacy and research organization committed to actively engaging our community in a wide variety of grassroots activities that promote HAE education and awareness. We provide personalized services to address the unique needs of people with HAE and their families, which includes helping them secure access to and reimbursement for modern HAE medicines. Our great success in supporting clinical research has resulted in a variety of FDA-approved therapeutic options. We work closely with expert physicians to continuously upgrade our community’s quality of life through improving diagnosis and knowledge of the condition, and encourage an individualized approach to selecting an optimal treatment. The HAEA is product and company neutral, and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies. Our Mission: To lead a nationwide advocacy movement that focuses on increasing HAE awareness and education, empowering access to suitable treatment, and fostering ground-breaking research that includes searching for a cure. Our Vision: Unrestricted access to therapy so people affected by HAE are unburdened by symptoms and able to experience life to the fullest. Our Values: To fulfill our community's highest priority needs with innovative programs, services, and activities that are delivered with an extraordinary level of empathy, kindness, and compassion. Follow us on Social Media! Facebook: @hereditaryangioedema Twitter & Instagram: @us_haea YouTube & Vimeo: @ushaea
- 网站
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https://www.haea.org
Hereditary Angioedema Association - HAEA的外部链接
- 所属行业
- 非盈利组织
- 规模
- 11-50 人
- 总部
- Fairfax，Virginia
- 类型
- 非营利机构
- 创立
- 1999
- 领域
- hae、scientific research、advocacy、non profit、patient association、advance hae、patient support group、rare disease、hereditary angioedema和patient advocate
地点
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主要
获取路线
10560 Main St
US，Virginia，Fairfax，22030
Hereditary Angioedema Association - HAEA员工
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Kate Kelly, LSW
Nonprofit professional with leadership, communication, management, and philanthropic experience. Volunteer health advocate for fellow patients with…
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Lois Perry
Retired - Director Of Health Services at Hereditary Angioedema Association - HAEA
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Sandy Gonzalez-Aquino
Senior Graphic Designer @ Hereditary Angioedema Association - HAEA | Master of Arts
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Brenda Minnick
Patient Services Support at Hereditary Angioedema Association
动态
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???Applications for HAEA College Scholarships Are Open! The HAEA is proud to support students with a confirmed HAE diagnosis in achieving their academic dreams. Two incredible scholarships are available: Pam King HAEA Scholarship HAEA Scholarship for Aspiring Healthcare Professionals ?? Fall 2025 Application Period: February 1st - March 31st, 2025 ?? Learn more & apply: https://lnkd.in/d4siyXtw #HAEAScholarships #HAE #HAEA #HereditaryAngioedema #HAEAScholarships
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Today in the Northern California Bay Area! ??? HAEA Board Member & former Health Director Lois Perry, HAEA Youth Programs Manager Lisa Facciolla, and HAE expert physician Joshua Jacobs joined the Northern California HAE community for an unforgettable HAEA Community Connections Lunch! Attendees came together for an afternoon filled with connection, shared experiences, and inspiring stories, strengthening the bond within the HAE community. ?? Stay updated on upcoming HAEA events: https://lnkd.in/euv4FiqY #CommunityConnections #HereditaryAngioedema #HAE #HAEA
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?? You're Invited! Virtual HAEA Meet & Greet ?? Join us for an exciting online event designed to bring our HAE community together! Whether you're new to the HAEA or just want to reconnect, this event is the perfect space for support, learning, and connection. ?? Date: March 25th, 2025 ?? Time: 7:00 PM ET / 4:00 PM PT ?? Location: Virtual Event ?? Guest Speaker: Anita Wilkerson, Individual with HAE ?? Register now: https://lnkd.in/e_fgdKYS Tag a friend who should join! ???? #HAE #HAEAwareness #HAEACommunity
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Advocate for Change! ??? Equip yourself with the knowledge to make a difference. Join us TOMORROW for the Welcome to Congress webinar at 6pm ET! Register here: https://lnkd.in/dQbkf4-z #HAEA #HAE #HereditaryAngioedema #Advocacy #HAEAdvocacy #LegislativeAdvocacy #RareDiseaseAdvocacy
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?? Join Our Virtual HAEA Meet & Greet! ?? Are you new to the HAEA or looking for a refresher on all we have to offer? This is your chance to connect, learn, and be empowered within the HAE community! ?? Date: March 25th, 2025 ?? Time: 7:00 PM ET / 4:00 PM PT ?? Location: Virtual Event ?? Guest Speaker: Anita Wilkerson, Individual with HAE ?? Register today here - https://lnkd.in/e_fgdKYS Don't miss this opportunity to build meaningful connections! ???? #HAEA #HAECommunity #VirtualMeetAndGreet #HAESupport
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Your Voice Matters! ?? Learn how to advocate for the HAE community at our webinar! Join us for the Welcome to Congress webinar on next Tuesday, March 11th at 6pm ET. Register today here: https://lnkd.in/dQbkf4-z #HAEA #HAE #HereditaryAngioedema #Advocacy #HAEAdvocacy #LegislativeAdvocacy #RareDiseaseAdvocacy
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?? Last Day to Apply for a 2025 Summit Travel Grant!?? ?? Don’t miss your chance to attend the 2025 US HAEA National Summit. ?? Baltimore, MD | July 10-13, 2025 ? Why Attend? ?? Connect – Engage with the HAEA community ?? Learn – Stay up to date on the latest HAE advancements ?? Advocate – Help protect access to life-saving treatments ?? Travel Grants Available! ?? Financial assistance for transportation & accommodations—awarded through a lottery system! ?? Deadline: TODAY! ?? Notifications Sent: Week of March 17, 2025 ?? Questions? Call (866) 798-5598 or email [email protected]. ?? Apply now before it’s too late! https://lnkd.in/efB2-DFw #HAEASummit2025 #HAECommunity #EmbracingaBrighterFuture #HAEA #HAE
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?? Today is Rare Disease Day! ?? Did you know that over 300 million people worldwide live with a rare disease? Among the 6,000+ identified rare diseases, Hereditary Angioedema (HAE) is one of them. Join us in raising awareness and showing support for the rare disease community today and every day! ???? ?? Watch to learn more - https://lnkd.in/eVVkDVcH #RareDiseaseDay #HAE #SupportRare #HAEA #AdvocacyinAction #RareDC2025
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?????HAEA Grassroots Advocates went to Capitol Hill today for Rare Disease Week, making their voices heard loud and clear! By sharing their stories and meeting with lawmakers, they’re fighting for better policies and a brighter future for the HAE community.?? We were also so excited to see so many familiar faces on the hill today including Congresswoman Emilia Sykes, Congressman Chuck Fleishman, Congressman Paul Tonko, Senator Marsha Blackburn, and Senator Cory Booker. Thank you to all of the legislators who met with us today! EveryLife Foundation for Rare Diseases #HAEAdvocacy #RareDiseaseWeek #HAEA #HAE #HereditaryAngioedema #AdvocacyInAction
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