???? Breakthrough HAEA-Initiated Research on Quality of Life Published in a Prestigious Medical Journal We are thrilled to announce that an HAEA-initiated research project, involving over 500 HAEA friends, has led to the development of a groundbreaking HAE-specific tool to measure Quality of Life for people with Hereditary Angioedema (HAE) in the United States. The prestigious medical journal Annals of Allergy, Asthma, and Immunology has published our article, highlighting this important research achievement. Our new Quality of Life tool is a game-changer for the HAE community, helping physicians and researchers: ? Accurately capture the daily impact of HAE on individuals and families, ? Show the life-changing benefits of modern HAE treatments, and ? Ensure the true challenges of HAE are not under-reported in the US. Stay tuned for more exciting HAEA research updates that aim to improve the health and well-being of our community! ?? Click here to read the full study - https://lnkd.in/eyxeRRh9 #HAEA #HAEresearch #QualityOfLife #MedicalBreakthrough #HAE #HereditaryAngioedema
Hereditary Angioedema Association - HAEA
非盈利组织
Fairfax，Virginia 1,542 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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?? ?? Attention Individuals with HAE: Medicare Open Enrollment Ends December 7th! ?? Open Enrollment Dates: October 15th - December 7th. Medicare Open Enrollment is your opportunity to review your plan and ensure it meets your specific healthcare needs. With changes coming to Medicare in 2025, it’s essential to take the time to: -Understand your current plan -Explore your options: Straight Medicare (Parts A, B & D) or a Medicare Advantage Plan -Choose the right plan for YOU! no one-size-fits-all solution! For individuals with HAE, ensure your plan provides access to the treatments, specialists, and medications you rely on for your care. Learn more at www.medicare.gov. or contact an HAE Health Advocate at [email protected] for more information. #MedicareOpenEnrollment #HAE #HereditaryAngioedema
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?? ?? Happy World Children's Day 2024! Today, we celebrate the strength, resilience, and joy of children everywhere. At HAEA, we are proud to support families and children in the HAE community through our Families4HAE fundraiser. Together, we’re raising awareness, sharing resources, and building a brighter future for every child living with HAE. Join us in making a difference—click here to donate to our our Families4HAE fundraiser! https://lnkd.in/eSWSdqPJ #WorldChildrensDay #Families4HAE #HAEA #HAECommunity #HereditaryAngioedema #StrongFamiliesStrongKids
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?? Calling HAEA community members of all ages! Join the HAEA Health Team as they host a virtual Self-Care Bingo! Take a break and focus on your well-being with our fun, virtual Self-Care Bingo event! ?? Date: Tuesday, December 3rd, 2024 ? Time: 7:30 PM - 8:30 PM ET Be sure to register using the link here to receive your bingo card! https://lnkd.in/ed4RMW6i #SelfCare #HAEACommunity #Wellness #BingoEvent #HAE #HereditaryAngioedema
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?? ?? How do your donations make a lasting impact? Just last year, the HAEA was able to send over 500 copies of the HAEA Children’s Book Series to families, friends, school libraries, and industry professionals! Your donation to the #Families4HAE fundraiser will continue to support this resource, and others, that provide valuable support to young children with HAE. ?? DONATE TODAY HERE: https://lnkd.in/eSWSdqPJ #HAEA #HAEAyouth #HereditaryAngioedema #HAE #ChildrensBook
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?? ?? Tune in this Thursday for the HAEA Treatment Education Series Webinar: Back to Takhzyro. Hear from Dr. Joshua Jacobs and Takeda Patient Advocates Mike & Lexi, who will share valuable insights and updates. ??? Date: Thursday, November 21st ? Time: 7:00 PM ET / 4:00 PM PT ?? Sponsored by: Takeda Don't miss out on this informative session! Register HERE: https://lnkd.in/e-9v3q3A #HAE #HAEA #HereditaryAngioedema #TreatmentEducationSeries #Webinar
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?? Today in Boston ???? HAEA Senior Director of Health and Research Christine Selva, along with the HAE community, gathered for an inspiring HAEA Community Connections event in Massachusetts! Attendees enjoyed an incredible afternoon of connection and shared stories. ?? Stay informed about upcoming HAEA events HERE: https://lnkd.in/euv4FiqY #CommunityConnections #HAEA #HAE #HereditaryAngioedema
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?? ?? Tune into this month’s HAEA Treatment Education Series Webinar: Back to Takhzyro. Hear from Dr. Joshua Jacobs and Takeda Patient Advocates Mike & Lexi, who will share valuable insights and updates. ??? Date: Thursday, November 21st ? Time: 7:00 PM ET / 4:00 PM PT ?? Sponsored by: Takeda Don't miss out on this informative session! Register HERE: https://lnkd.in/e-9v3q3A #HAE #HAEA #HereditaryAngioedema #TreatmentEducationSeries #Webinar
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?? Today in Tucson! ?? HAEA Youth Programs Manager Lisa Facciolla and Pam King HAEA Scholarship recipient Jasmeen Aldaco joined the Arizona HAE community for an unforgettable HAEA Community Connections lunch! Attendees came together for an afternoon of connection, shared experiences, and inspiring stories. ?? Stay updated on upcoming HAEA events: https://lnkd.in/euv4FiqY #CommunityConnections #HereditaryAngioedema #HAE #HAEA
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?? ?? Did you know the US HAEA jointly offers free, fully accredited Continuing Medical Education (CME) courses for physicians, pharmacists, and other healthcare providers? The courses consists of expert HAE physicians providing an overview of: 1. Updates on HAE Diagnosis and Biomarkers - 0.5 AMA PRA Category 1 Credit(s)? 2. Updates on Emerging HAE Therapies - 0.5 AMA PRA Category 1 Credit(s)? 3. Methodology for Designing and Validating a New HAE QoL Instrument - 0.5 AMA PRA Category 1 Credit(s)? 4. Panel Discussions: Challenging Issues in HAE Diagnosis and Management - 1.5 AMA PRA Category 1 Credit(s)? Click here to learn more and sign up today: https://lnkd.in/gHDxcncw #HAE #HAEA #HereditaryAngioedema #CMEProgram
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