Privacy Notice and Authorization
By registering in the LGMD2B/Miyoshi screening database, maintained by the Jain Foundation, you will be providing us with certain individually-identifiable healthcare information. The privacy of this information is protected under various federal, state and international laws, including the Health Insurance Portability and Accountability Act (HIPAA) in the United States. We hold your individually identifiable information in the strictest of confidence, and will only use or disclose it to others with your specific consent.
By providing your information in the following Patient Registration, you authorize the use of such data in our aggregate patient registry, which may be used for research purposes to identify possible diagnostic or treatment options. In the future, you may choose to share additional individually identifiable healthcare information with us, such as results of genetic tests or information on your health status; we will always hold such information in strictest confidence as well. Your registration will be stored in an electronic database that is secured, and this authorization will end when the database is destroyed.
Material presented on this website is for informational purposes only, and the Jain Foundation makes no representations, warranties or assurances as to the accuracy, currency or completeness of the content provided, including third party information. Information obtained on this website does not substitute for consulting a physician or healthcare provider knowledgeable about LGMD2B/Miyoshi.