AlphaNet created the Big Fat Reference Guide to Alpha-1 (BFRG) for individuals with Alpha-1 Antitrypsin Deficiency (Alpha-1), their family members, caregivers, and healthcare providers as an explanation of the basic principles of wellness and Alpha-1 health management. The BFRG was written and compiled by expert Alpha-1 medical doctors, nurses, researchers, caregivers, and individuals with Alpha-1.
The BFRG contains all the information Alphas and their family members need to gain a basic understanding of this genetic condition and how it is diagnosed and provides guidelines for the promotion of good health that are recommended for all Alphas, whether or not they have any symptoms associated with their condition. You can find specific recommendations for Alphas according to the stages of their condition beginning with the asymptomatic stage where no signs or symptoms of disease are readily apparent, as well as more detailed information concerning illnesses that Alphas may develop, including diseases of the lungs and liver, and other conditions.
The BFRG also offers:
- information regarding health insurance issues under Information for all Alphas
- guidance on how you can evaluate and make choices about the issues you may encounter in the workplace as well as legal protections against genetic discrimination
- information about how and when to use augmentation therapy for the treatment of Alpha-1
- specific information about the medications approved by the FDA to treat the lung disease of Alpha-1 Antitrypsin Deficiency
The Big Fat Reference Guide is updated frequently to ensure all information is as accurate and up-to-date as possible.
To register for access to the BFRG, please visit bfrg.alphanet.org. If you are enrolled in AlphaNet’s Subscriber Portal you can access the BFRG at subscriber.alphanet.org.