Member of European Parliament Vytenis Andriukaitis addresses the need for dedicated support and awareness for Alpha-1 patients and calls for improved funding, research, and treatment access across Europe. #Alpha1AwarenessMonth
Alpha-1 Foundation
学术研究
Coral Gables,FL 2,735 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
3300 Ponce de Leon Blvd.
US,FL,Coral Gables,33134
Alpha-1 Foundation员工
动态
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"Patient voices matter. Doctors, researchers, and policymakers need to hear directly from patients — whether it is Alpha-1, COPD, or another condition. Many people are unaware that there’s a problem until you bring it to them. So, share your story," says Patty Tew. Read her Alpha story here: https://lnkd.in/eef8mQWq
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Member of the European Parliament Katerina Konecna reminds us that rare diseases like Alpha-1 often go unnoticed. Let's join her in advocating for timely care and support for all rare disease patients. #Alpha1Awareness
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Did you know 70% of people with Alpha-1 experience lung-related issues, including asthma, COPD, and bronchiectasis? Learn more and get involved with the Alpha-1 Research Registry today: https://lnkd.in/ek2rkg8s
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The American Association for the Study of Liver Diseases (AASLD) "The Liver Meeting 2024" is currently taking place in San Diego, CA, with the Alpha-1 Foundation as a proud exhibitor. Dr. Mark Brantly, Dr. Virginia Clark, Dr. Pavel Strnad, and Dr. Jeffrey Teckman presented at Sunday's symposium titled " Are you overlooking a leading genetic culprit in liver disease?" to over 200 people in-person and another 300 online! #Alpha1Awareness
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Alpha-1 can seriously impact liver health in infants, children, and adults. While cirrhosis and liver cancer are potential complications, early diagnosis and management can significantly improve outcomes. Learn more about Alpha-1 liver disease here: https://lnkd.in/eJqVBsHS #Alpha1Awareness
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From caregiver to Alpha-1 Support Group Leader, Norma found strength and support in the Alpha-1 community after her husband's Alpha-1 diagnosis. Her story reminds us that we are not alone on this journey, and together, we can find a cure. #Alpha1Awareness
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Too many Alpha-1 patients in Europe face barriers to the treatment they need. Member of the European Parliament Tomislav Sokol advocates for better worldwide access and recognition for the Alpha-1 community. Join the movement! #Alpha1Awareness
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Better care for Alpha-1 starts with educated clinicians. In honor of #NPWeek, we're celebrating nurse practitioners and offering our Continuing Medical Education (CME) series to ensure they have the latest information on Alpha-1. To learn more, visit: https://lnkd.in/egntCQvp
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Explore the Alpha-1 Foundation's Video Library and learn from experts in the field! Visit alpha1.org/video-library/ today to watch presentations, webinars, and more. #Alpha1Awareness
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