The ALS Association Online and Mobile Privacy Policy

The ALS Association is committed to protecting the privacy of its users. Information gathered by us is used to monitor the effectiveness of our site, personalize your Internet experience, and respond to your questions and requests. The ALS Association respects the privacy of every individual who uses ALS Association-owned websites, mobile applications and other online products and services (collectively,"Site"). This notice applies to our information collection practices for this Site. Because your privacy is important to us, we provide you with notice and choices about the collection and use of your information. To make this notice easy to find, links are provided at the bottom of our homepage and on every page within our website.

Additionally, each page that requests personally identifiable information reminds you of the importance of your privacy and provides a link to the privacy policy. By using our site you accept the practices described in our Privacy Policy.

Use of Cookies

We use cookies, small files that are sent to your Web browser and stored on your computer's hard drive, to improve your digital experience. The cookie is used to speed up your access to the Site and the information you wish to see, but it does not contain any personal information. The majority of Web browsers accept cookies, but the “help” menu on your browser should give you options for preventing, accepting, or receiving notice of new cookies. However, please be aware that if you block cookies, some website functionality may be lost.

Data Collection

We collect two types of information:

  1. Standard Web server traffic pattern information.
  2. Personal information. Personal information, including, but not limited to, name, address, age and telephone number.

Personal information may be needed for certain online activities:
Patient information: As an ALS patient, your information 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.

If you choose to customize the Web site to your needs by becoming a registered Web user, we retain the preferences you select so that you will not have to reenter the information each time you access our Web site. These preferences may include requests for email, news, language preferences, and interest group selections (patient, medical professional, volunteer). You can access your profile by entering your user name and password each time you use the Web site. You are not required, however, to enter your name or mailing address. If you register to participate in an ALS Association event, such as the Walk to Defeat ALS using our event registration site, we may ask you if you have a connection to ALS. This information is useful for event purposes. Further, if you elect to use our referral service to inform a friend about the event registration site, we will ask you for your friend’s name and address. We will store this information in order to send your friend a one-time email inviting him or her to visit the site.

If you choose to donate to our organization, we maintain a record of your contribution. Requests: If you submit an online request for ALS Association products such as free brochures, or submit a question through a “contact us” query, we may have to gather additional information from you to respond to your request. Such information will vary with the request but often includes name, shipping address, telephone number, and email address.

Data Use

We limit the use of information provided to us on our Site to the following:

Internal Use

  1. If you do not make a service request, donation, purchase, or otherwise identify yourself, we will have no personally identifiable information about you. We will only use aggregate information derived, in part, from your use of our site to improve our site and our service to you.
  2. If you provide personal information, we may enter your name into our constituent database and contact you in order to: 1. Complete voluntary surveys seeking feedback for quality and service improvement purposes.
  3. Supply you with information including ALS Association related news, campaigns, events and services.
  4. Request voluntary time or monetary contributions to The ALS Association.
  5. We collect the email addresses of those who communicate with us by email. Inquiries may be forwarded to the appropriate ALS Association department for response and may be entered into our constituent database. If your name is entered into the database, we may contact you (see (2) above).

External Use
Your information is privileged and confidential and will not be shared or released to any organization or business entity other than those affiliated with or working in conjunction with The ALS Association as follows:

  1. 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.
  2. We occasionally hire other companies to provide limited services on our behalf. We will only provide those companies the information they need to deliver the service and prohibit them from using that information for any other purpose.

Your Options

We respect your privacy and allow you to restrict internal and external sharing of your personal information. We recognize that you may wish to limit the ways in which we contact you and we offer the following options:

  1. Do not contact me by telephone.
  2. Do not contact me by postal mail.
  3. Do not contact me by email.
  4. Do not share my contact information with other non-profit organizations.
  5. Do not contact me with fundraising requests supporting The ALS Association.
  6. Do not contact me.
  7. Delete all of my data.

Upon request, we will provide you with the information we maintain about you so that you may request corrections. This information will be sent via postal mail, which we believe is the most secure method of communication. Please contact us by email or in writing at:

Security and Privacy Requests: 
The ALS Association
1300 Wilson Boulevard
Suite 600
Arlington, VA 22209

To protect your privacy and security, we will take reasonable steps to verify your identity before providing information or making corrections.

Data Security

The security of your personal information is very important to the ALS Association (referred to hereafter as the Association) and we are committed to protecting the information we collect. Only Association staff, contracted consultants, and vendors have access to this data based upon minimum necessary access. We conduct annual cyber security compliance audits to ensure that all data is protected to the highest extent possible. Ongoing data security training is conducted for all staff and our information technology infrastructure has been designed with the highest grade firewalls as another layer of protection for donor information.

We have implemented and maintain appropriate technical and organizational security measures, policies, and procedures designed to reduce the risk of accidental destruction or loss, or unauthorized disclosure or access to such information appropriate to the nature of the information, concerned, including,

  • where appropriate, password protection, encryption, tokenization, and secure socket layering to protect our donation and other forms; and
  • following strict security procedures in the storage and disclosure of your personal information to prevent unauthorized access to it.

Data is used for communication and solicitation processes. We use third party partners to collect data for the Association to process donations and for event registrations. These partners are required to adhere to the Association data use, security policies and applicable compliance requirements. 

External Links
Our privacy policies apply only to your use of an ALS Association Site. The website contains links to other sites, including sites that have a special relationship with us. We do not disclose personably identifiable information to those operating linked sites and we are not responsible for their privacy practices. Links to other sites do not imply an endorsement of the materials or policies on those websites. You should read the privacy policies of each site you visit to determine what information that site may be collecting about you.

This privacy statement will be updated periodically and posted on our Site. It applies only to our on-line practices and does not encompass other areas of the organization. We reserve the right to change this policy at any time by posting revisions. By accessing or using the Site, you agree to be bound by all of the terms and conditions of The ALS Association Online and Mobile Application Privacy Policy as posted at the time of your access or use. If you have any questions about our policy or our compliance, you may send us an email at

Last update 02/02/23

Print Friendly and PDF