At AFBS, we take the protection of our community very seriously and that includes information about our community members.  Sharing information with our organization is voluntary, and we protect what you share in compliance with local and international regulations, including the General Data Protection Regulation (GDPR) and the Data Protection Act (DPA).  Our Data Privacy Policy may be updated as needed.  The following guidelines are presented in FAQ format for our community:

Is storing my information with AFBS optional?


How might my personal information be collected?

Your information is provided to us through surveys, forms, email, and/or social media.

What information may be stored?

Information such as your name, email address, basic demographics, the names of relevant family members, genetic diagnosis, subtype, age range of affected individuals, and presenting symptoms may be stored. 

Why is my personal information stored and how might it be used?

Your personal information is provided to our organization through email, surveys, forms, or social media and that information is used to manage communication and inform our community members of initiatives covered by our mission in pursuit of a treatment or cure for nemaline myopathy.  

Who will use my personal information?

Your information will be stored on a protected computer database and only shared with those contracted to perform work for AFBS who need access to the information in order to perform their duties. We comply with laws that may mandate the release of information for legal purposes.

How will my information be protected?

Your personal information will be kept confidential and protected to the best of our abilities on a secure computer database. Survey-collected data is retained by our data control officer. Data is encrypted in-transit and at-rest.

How long will my information be stored?

Your information may be stored for the duration of a particular project, or as long as AFBS is operating as a nonprofit organization.  You may ask that your information that is currently stored by AFBS be deleted at any time by contacting AFBS at  Such requests are fulfilled within 30 days. If you need this information to be provided to you in another language, please contact our team at