This Thanksgiving, we are thankful for the incredible contributions of our Alpha-1 community in the past year. Your involvement in research, fundraising, raising #Alpha1Awareness, and educational events is invaluable to our mission. Today, we celebrate your strength and dedication. We also encourage you to discuss Alpha-1 and the importance of genetic testing with your loved ones. ??
Alpha-1 Foundation
学术研究
Coral Gables，FL 2,746 位关注者
Committed to finding a cure for Alpha-1 and to improving the lives of people affected by Alpha-1 worldwide.
关于我们
The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improving the lives of people affected by Alpha-1 worldwide. The Foundation is a not-for-profit Florida corporation founded in 1995 by John Walsh, Sandy Lindsey and Susan Stanley, three individuals diagnosed with Alpha-1. A majority of the Board of Directors are either diagnosed with Alpha-1 or have a family member diagnosed with Alpha-1. The Foundation has developed a solid infrastructure to promote research and development of new therapies for improving the quality of life for those diagnosed with Alpha-1. It has fostered collaborations with investigators throughout the United States and Europe, working closely with the National Institutes of Health, Food and Drug Administration, individuals affected by Alpha-1 and the pharmaceutical industry to expedite the development of improved therapies. The Foundation participates in industry and government liaison groups and develops strategic alliances with government, industry and other national and international health and research organizations. The Alpha-1 Foundation has invested more than $90 million to support Alpha-1 research and programs at 123 institutions in North America, Europe, the Middle East and Australia. The Foundation has established activities and programs including the Alpha-1 Research Registry, the Alpha-1 DNA & Tissue Bank, the Alpha-1 Research Network, International Scientific Conferences, and the Gordon L. Snider Critical Issues Workshop Series. Follow the Alpha-1 Foundation on social media for up-to-date Alpha-1 news and information: Facebook - Alpha1Foundation Twitter - alphafriend Instagram - Alpha1Foundation
- 网站
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https://www.alpha1.org
Alpha-1 Foundation的外部链接
- 所属行业
- 学术研究
- 规模
- 11-50 人
- 总部
- Coral Gables，FL
- 类型
- 非营利机构
- 创立
- 1995
- 领域
- Research、Health、Education和Alpha-1 Antitrypsin Deficiency
地点
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主要
获取路线
3300 Ponce de Leon Blvd.
US，FL，Coral Gables，33134
Alpha-1 Foundation员工
动态
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Member of European Parliament Sérgio Humberto highlights that only 7 out of 100 Alpha-1 patients get diagnosed in time, leading to severe health issues. Let’s push for early detection to improve the lives of Alphas! #Alpha1Awareness
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Member of European Parliament Gabriel Mato brings attention to the fact that Alpha-1 is the leading genetic cause of liver transplants in children. Early diagnosis and better care can change lives! #Alpha1Awareness
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Alpha-1 can impact multiple organs, causing 68% of liver-affected Alphas to also experience lung symptoms. Learn more about the connection between Alpha-1 and liver health by participating in research: https://lnkd.in/ek2rkg8s #Alpha1Awareness
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Member of European Parliament Romana Jerkovi? insists that Alpha-1 patients wait too long for diagnosis and treatment, advocating for the prioritization of rare diseases like Alpha-1 in healthcare policies. #Alpha1Awareness
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Are you on a journey with Alpha-1 Liver Disease? The Redwood Study, sponsored by Takeda, is researching an investigational study drug for Alpha-1 Antitrypsin Deficiency–Associated Liver Disease. If you are a ZZ Alpha, you may qualify for this study. To learn more, visit: https://lnkd.in/ev5bxsDD
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Could you have Alpha-1? A simple blood test can give you the answer. Learn more about Alpha-1 and the importance of testing: https://lnkd.in/eGBX8B6W #Alpha1Awareness
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Member of European Parliament Stine Bosse emphasizes that rare diseases, by nature, require robust data to ensure better understanding and care. When we lack data, we limit our ability to address the unique challenges patients face. Let’s push for stronger data collection and analysis to improve outcomes for Alpha-1 patients and all those affected by rare diseases. #Alpha1Awareness
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David and his wife, Kari, are facing Alpha-1 together. Since her diagnosis in 2015, she's been proactive and engaged, raising funds and awareness for Alpha-1. Now, David is going beyond his caregiver role and working with his wife to restart the "Glass City Alphas" support group to build a stronger community. #Alpha1Awareness
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Member of European Parliament Catarina Martins states that rare diseases like Alpha-1 often don’t get the attention they need. It’s time to bring Alpha-1 to the forefront of EU health policy. #Alpha1Awareness