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 www.alsa.org (/privacy-policy.html) website.
We collect two types of information:
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 www.alsa.org 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, information on specific cancer types, 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.
We limit the use of information provided to us on our Site to the following:
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:
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:
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 at email@example.com or in writing at:
Security and Privacy Requests
The ALS Association
1275 K Street NW
Washington, DC 20005
To protect your privacy and security, we will take reasonable steps to verify your identity before providing information or making corrections.
The security of your personal information is very important to us and we are committed to protecting the information we collect.
Our privacy policies apply only to your use of an ALS Association Site. The www.alsa.org 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.
Last update 04/26/17