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Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition – it is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age.
The Alpha-1 Foundation supports testing for those at risk for Alpha-1. In response to concerns surrounding testing, privacy and the benefit of an early diagnosis, the Medical University of South Carolina (MUSC), with the support of the Alpha-1 Foundation, developed a free and confidential opportunity for testing. This is a research study called the Alpha-1 Coded Testing (ACT) Study.
The Foundation also established the Alpha-1 Research Registry at MUSC to encourage research, the development of new treatments and a cure for Alpha-1. The Registry is a confidential database made up of both Alphas and Alpha-1 carriers.
The Alpha-1 Genetic Counseling Program is also located at MUSC. The genetic counselor is available to provide support and information to patients, caregivers, and healthcare professionals.
Donate today to help us find treatments and cures.