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ALS Family Registration

About Extra Hands for ALS
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What Is ALS?
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Privacy Policy
While information is the cornerstone of our ability to provide a
high-quality service, our most important asset is the trust of Extra
Hands participants. Keeping participant information secure, and using it
only as our participants would want us to, is a top priority for us.
Here then, is our promise to participants:
- We will safeguard, according to strict standards of security and
confidentiality, any information participants share with us.
- We will limit the collection and use of participant information to
the minimum we require to deliver superior service to participants,
which includes advising participants about our services and other
opportunities, and to administer our service.
- We will permit only authorized employees, who are trained in the
proper handling of participant information, to have access to that
information. Employees who violate our Privacy Promise will be subject
to our normal disciplinary process.
- We will not reveal participant information to any external
organization unless we have previously informed the participant in
disclosures or agreements, have been authorized by the participant, or
are required by law.
- We will always maintain control over the confidentiality of our
participant information.
- We will tell participant in plain language initially, and at least
once annually, how they may remove their names from mailing lists. At
any time, participants can contact us to remove their names from such
lists.
- Whenever we hire other organizations to provide support services, we
will require them to conform to our privacy standards and to allow us to
audit them for compliance.
- We will not use or share - internally or externally - personally
identifiable medical information for any purpose other than as disclosed
to the participant when the information is collected, or to which the
participant consents.
- We will attempt to keep participant files complete, up to date, and
accurate. We will tell participants how and where to conveniently access
their information (except when we're prohibited by law) and how to
notify us about errors which we will promptly correct.
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