The ALS Association

Privacy Policy

This is the Web site of The ALS Association,

Our postal address is:

The ALS Association
1275 K Street NW
Suite 250
Washington, DC 20005

You can contact us via email at or by phone at 202-407-8580.

We provide this notice to explain our online information practices. By visiting The ALS Association at, you are accepting the practices described in this privacy notice.

I. Privacy Policy Statement

The ALS Association is committed to protecting the privacy of its users. Information gathered by The ALS Association is used to monitor the effectiveness of our site, personalize your Internet experience, and respond to your questions and requests.

Aggregate Information

When you visit our Web site, our server automatically logs (records) domain name and standard anonymous information about the operating system and Web browser you are using, as provided by your Web browser. This automatically collected information is used for statistical purposes to help us manage our site and better serve the community, but it does not identify you in any way.

Identifiable Information



The ALS Association rents or exchanges its donor list with other qualified non-profit organizations to off-set fundraising expenses. The ALS Association respects the privacy of its financial supporters and, as such, would be pleased to exclude you from its list rental and exchange program. Please inform us if this is your desire at (888) 949-2577.

Patient & Family Information

Patient and family information, including, but not limited to, name, address, age and telephone number, is confidential and will only be shared with ALS Association affiliate entities with written permission from a patient or their designee (except to provide appropriate ALS Association affiliated entities the names and phone numbers of patients and family members who call The ALS Association's 800 number information and referral service seeking information or help and give their verbal permission for their names to be passed on so the local ALS Association entity can provide such help). Under no circumstances will The ALS Association provide information to outside entities, except where required by law and then only after providing notice to the patient and/or designee. The ALS Association will, upon request of a patient or their designee or caretaker, serve as an intermediary between patients and outside entities where deemed appropriate.

The ALS Association may provide to government agencies and outside entities aggregate data on ALS including incidence and prevalence and number of patients served by The ALS Association.

II. Data Security Statement

The security of your personal information is very important to us and we are committed to protecting the information we collect. uses firewalls and has security measures in place at its physical facilities to protect against the loss, misuse, or alteration of information that we have collected from you at our Web site. This includes the use of Secure Sockets Layer (SSL) for processing contributions and library orders securely. SSL is the proven standard for secure Web messaging transactions.

The ALS Association reserves the right to change this policy at any time. Our privacy policy will be kept up-to-date and clearly posted on our Web site.

Updated 09/01/10

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