Collection, Use and Security of Personal Information
A. Sjögren's Foundation Collection of Personal Information
1. The Sjögren's Foundation will collect Personal Information on an individual only if the individual provides the information to the Foundation. The Foundation also may collect information about a person who has been referred to the website to send them emails regarding the Foundation's efforts or a person to whom the Foundation has been asked to send emails regarding the Foundation’s programs or efforts. If a person donates to the Sjögren's Foundation, the Foundation may collect sensitive Personal Information such as the donor’s credit card number, card type, expiration date, and keep a record of the financial transaction.
The Sjögren's Foundation may collect Demographic Information it obtains from individuals and third parties for fund raising purposes and to notify persons of Foundation programs, events, educational opportunities and upcoming meetings.
The Sjögren's Foundation may collect Aggregate and Transactional Information and add to its database every time a person visits a Foundation Web Site. Also, the Foundation collects Aggregate Information for research purposes.
2. Types of information: "Personal Information" is "Demographic Information" which identifies a specific individual with a minimal degree of effort. Demographic Information includes name, address, city and other similar information. Transactional Information is data collected on an individual based on the individual’s interactions with the Sjögren's Foundation, which may include sensitive information such as credit card information and Medical Information. Aggregate Information is information presented in summary or statistical form which does not contain data that would permit the identification of a specific individual without extraordinary effort.
B. Sjögren's Foundation Use of Personal Information
1. When an individual provides Personal Information to the Sjögren's Foundation, the Foundation may use the Personal Information for its programs, research and fundraising.
2. The Sjögren's Foundation uses Transactional Information for research purposes for the development or implementation of its programs, products and services. The presumption is that, since Transactional Information is highly proprietary, it will not be disclosed to third parties.
3. The Sjögren's Foundation will disclose all information as required by law.
4. The Sjögren's Foundation will make every effort to discontinue the use of an individual's Personal Information as soon as practicable if requested by that individual. The Foundation may need to retain Information in its archives and records to comply with law, resolve disputes, analyze problems, assist with any investigations, and take other actions otherwise permitted or required by law.
To request removal of your information from our database, contact the Sjögren's Foundation’s office at (301) 530-4420.
C. Specific Requirements
a. The Sjögren's Foundation will take reasonable and appropriate measures to keep Personal Information confidential and in a secure environment, including taking appropriate action in the event of unauthorized disclosure.
b. Access to Personal Information will be restricted to only those personnel of the Sjögren's Foundation with a legitimate business purpose.
c. The Sjögren's Foundation owns all Personal Information provided to it by individuals and collected in accordance with this Policy.
2. Third Party Disclosure
Permission is required before the Sjögren's Foundation discloses Personal Information to a third party. No permission is necessary for Aggregate Information, since Aggregate Information does not identify a specific individual.
a. For disclosure of Demographic Information (e.g., rentals or exchanges of donor lists), the Sjögren's Foundation as a minimum will use the "Opt Out" approach. An "opt-out" is obtained when the Foundation through some correspondence gives an individual the opportunity to decline or "opt-out" of disclosures to third parties. If the individual does not opt out, permission is deemed granted. Depending upon the nature of an activity or project, a higher standard than "opt-out" may be used, such as "opt-in" whereby an individual must affirmatively give consent before information is disclosed.
b. For research awardees, permission is deemed granted upon submission of an application for a grant to the Sjögren's Foundation. Therefore, the Foundation may disclose Personal Information, including funding and project summary information, on research program awardees to third parties.
c. The Sjögren's Foundation uses and allows third parties to use Aggregate Information for research purposes for the development or implementation of its programs, products and services.
Last updated 01/01/2017