~  Support Organization for Trisomy 18, 13 and
Related Disorders (SOFT) ~

Website and Data Privacy Policy


The European Union (EU) and some U.S. States (notably California) have established privacy policies to control website owner usage of the information consumers enter into a website.  These policies are said to apply to any website domiciled anywhere, world-wide.  It is not yet clear how the EU policy affects non-profit or USA organizations.  SOFT has members residing in the EU.

The EU’s policy requires, at a minimum, that the organization must inform users about:

  • Who the processor of the information is, which includes the business’ contact information
  • The categories of personal data the organization will collect and process through its website or mobile app.
  • Why the personal information is collected.
  • Whether the collected information will be disclosed to third parties.
  • How the users may exercise their rights regarding deletion of information and withdrawal of consent

The California legislation (“CalOPPA”) applies to commercial websites and it is not clear how it affects non-profit organizations.   CalOPPA is said to apply to any person or company in the United States (and conceivably the world) whose website collects personally identifiable information from California consumers.  That would include SOFT.

CalOPPA requires the website to feature a conspicuous privacy policy stating exactly what information is collected and with whom it is shared; it also requires the operator of the website or online service to comply with the site’s privacy policy. Those who fail to do so are at risk of civil litigation under the state’s Unfair Competition Law.

California’s act was later amended to include “Do Not Track” requirements.

To be considered in compliance with CalOPPA, the website’s privacy policy must contain the following:

  • A list of the categories of personally identifiable information the operator collects.
  • A list of the categories of third parties with whom the operator may share such personally identifiable information.
  • A description of the process by which the consumer can review and request changes to his or her personally identifiable information as collected by the operator.
  • A description of the process by which the operator notifies consumers of material changes to the operator’s privacy policy.
  • The effective date of the privacy policy.
  • “Do Not Track” policy explanation.

SOFT’s privacy practices are provided below.

~~~  SOFT’s Privacy Policy and Notice ~~~

SOFT’s  privacy notice discloses the privacy practices for SOFT’s website (www.trisomy.org). SOFT was incorporated in the State of Utah in 1980 as an I.R.S. 501(c)(3) non-profit volunteer-run organization providing family support to families having children with a trisomy condition.

SOFT’s current headquarters is located at 2982 South Union St., Rochester, NY 14624.  It’s telephone number is 1-800-716-7638 and contact with the various SOFT committees and the president can be made using the website’s “Contact SOFT” menu selection.

This privacy policy and notice is effective as of January 1st, 2018.

This privacy notice applies solely to information collected by this website. This policy and notice will notify you of the following:

  1. How and What Type of Information SOFT Collects
    Personally Identifiable Information refers to information that tells us specifically who you are, such as your name, email address, or phone number.  It might include, at your sole discretion, your child’s trisomy condition, surgery history, birth date and other information.Persons registering with SOFT are hereinafter referred to as “registrant or registrants.”A registrant need not enter any information to use this website (www.trisomy.org).  Information is entered only when voluntarily becoming a member of SOFT, or when requesting changes to previously-entered information.When registering, a registrant is required to give certain information; the minimum being name and email address.  This information is used to contact you about the organization’s services in which you have expressed an interest by the fact of your registration.

    At your option, you may also provide demographic information such as gender, birth date, medical diagnosis etc., of your child, as well as your address and phone number.

    All information collected is exactly what you voluntarily input into the website and there is no requirement for you to enter it, except for the required name and email address.

    SOFT is the sole owner of the information you voluntarily enter into the website.  SOFT will not sell, rent or transfer this information to a third party.  When necessary, we will use the information you supplied to respond to questions or comments submitted by you.

    SOFT occasionally uses aggregated demographic information to construct charts, graphs etc.  No identifiable personal information will be included in these.

    The SOFT website contains internal reports containing personal information but these are passworded and available to only those SOFT management personnel who have a need of the information.  Examples of subh reports include, but are not limited to,  the Surgery Committee which collects voluntarily-submitted data about children’s surgeries or the Conference Committee which registers families wishing to attend the annual conference.

    A public “Birthday Finder” list exists which provides a registrant’s child’s first name, city and dates of birth or death.  This allows SOFT members to send birthday cards, emails, Facebook posts, etc., to other member families.  A registrant may opt-out of this display of information.

  2. What does SOFT do with the information it collects.
    SOFT uses personal information to provide the organization’s information, services and family contacts that families are assumed to want, since they registered with the organization.A registrant’s personal information is NOT shared with other organizations.  It is available only to internal SOFT management staff or committees and to SOFT’s chapter chairpersons or state representatives.A registrant’s personal information will NOT be provided to other registrants without first obtaining permission from the registrant.  When registering with SOFT, the registrant has the option to select an opt-out choice that precludes SOFT with sharing the registrant’s personal information internally.A registrant’s email address may be used in a mass email announcing SOFT activities, that is sent to all SOFT registrants.   Such activities might include, but are not limited to, conferences, fund-raising activities, website changes or the publication of the SOFT Newsletter.  Individual notifications might include contacts about family demographic changes, the sending of remembrance cards or other family-specific actions.  A registrant’s opt-out status will preclude use of the registrant’s email address in this mass email..
  3. SOFT’s Use of Cookies
    Cookies are small data files that are served by a website and stored on your device. SOFT does not use cookies so none will be placed on your device.The SOFT website does use the Google Analytics system to quantify page usage and that system may place cookies on the SOFT website to do this, but none should be put on your device.
  4. Security
    The information you enter into the website is encrypted and transmitted to SOFT in a secure way. While we use encryption to protect personal information you voluntarily provide to SOFT online, we also allow only SOFT volunteers who need the information to access it, using passworded reports.Examples include the committee that emails “Remembrance” emails to SOFT member families whose children with trisomy have passed away.  Another example is a mass email to members announcing information about the annual family/medical conference or the publication of a new Newsletter edition.  The server in which the website host stores the website and personal information is kept in a secure environment.
  5. Links
    This website contains links to other sites. Please be aware that we are not responsible for the content or privacy practices of such other sites or possible malware or viruses they might contain.Examples of these links include, but are not limited to, other volunteer or non-profit websites or organizations, private family websites, government websites, publishers and professional medical literature.We encourage our website users to be aware when they leave our site and to read the privacy statements of any other site that may collect personally identifiable information.  See section 7 regarding SOFT’s  “Do Not Track” policy.
  6. Orders, Sales and Donations
    SOFT will from time to time sell books or “Trisomy Awareness Month” products or similar merchandise. To purchase these, you must provide shipping information such as name, address, email and phone number.  Should there be any problems with the order we will use this information to contact you.When donating to SOFT, you provide your name, address, email and phone number.  SOFT uses this information to send you a receipt and “thank you” for the donation.  If you donate “in honor of” or “in memory of” a child, you may provide certain demographic information about that child and the child’s parent so we can inform the parents of the donation.  This information is not required.Payment for SOFT products is made using the PayPal system.  After completing your order on the SOFT website, pressing the “submit” button takes you to PayPal where payment can be made.SOFT has no control over the use that PayPal makes of your personal information.  It is understood that it is used solely to make payment using your credit card or personal PayPal account.

    In no case does SOFT pass your information to third parties (except PayPal) when you enter purchase or donation information into the SOFT website.   Where the SOFT website provides a LINK to a vendor website, SOFT collects no information prior to the registrant transiting to the vendor website..

  7. “Do Not Track” policy.
    SOFT does not track its customers or members over time and across third party websites to provide targeted advertising or any other services.  The SOFT website therefore does not respond to Do Not Track (DNT) signals.  However, some third party sites do keep track of your browsing habits when they serve you content, which enables them to tailor what they present to you.  SOFT has no control over third party websites to which you might voluntarily transfer.
  8. Deletion of, or Changes to Personally Identifiable Information
    Personal information voluntarily provided to SOFT may be changed in two ways:a) By submitting a registration renewal form (available on the website); this results in the old information being overwritten with the new information.b)  By using the “Contact SOFT” selection on the website menu (see website menu).The “Contact SOFT” menu selection can also be used to terminate membership in SOFT.