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DSDN Privacy Policy

This privacy policy for the Down Syndrome Diagnosis Network (DSDN) (“we,” “us”, or “our”) describes how and why we might collect, store, use, and/or share your information when you use our programs and services (“Services”) such as when you:

  • Visit our website at 

  • Download and use our mobile application (DSDN App)

  • Donate money to the organization

  • Participate in DSDN programs and services as a volunteer or recipient (“member family”)

  • Engage with us in a related way, including any merchandise sales, surveys, marketing or events.

By engaging with DSDN in any way listed above, you consent to this privacy policy.

What information do we collect? 

We collect personal information that you voluntarily provide to us when you register and participate in our Services or when you contact us.

Information you disclose to us:

Personal Information: The personal information that we collect depends on the context of your interactions with us and our Services, the choices you make, and the products and features you use. The personal information we collect may include: 

  • Your name

  • Your email address

  • Password

  • Your geographic location, and in some cases, your mailing address

  • Your gender preferences

  • In some cases, contact information for one or more hospitals where you can be reached

Sensitive Information: With your consent, we process the following categories of sensitive information: 

  • Your personal connection to Down syndrome

  • Your child’s birth year and month

  • Your ethnicity

  • Any other ethnicities in your family

  • Groups you choose to be part of that may associate your child with a specific medical condition

  • Groups you choose to be part of that may associate you with sensitive personal information, including race, ethnic origin, marital status, age or sexual life. 

  • Content you create on the DSDN app, such as posts and comments

  • Content you provide through your camera roll on the DSDN app, such as photos and videos


Application Data: If you use the DSDN app, we may also collect the following information if you choose to provide us with access or permission: 

  • Mobile Device Access: We may request access or permission to your mobile device’s camera and photo library if you choose to upload any media. 

  • Push Notifications: We may request to send you push notifications within the DSDN app. If you wish to opt out from receiving these types of communications, you may turn them off in your device’s settings. 

Form Data (Google Forms and Jotform): If you complete a DSDN survey or a form, such as retreat registration or yard sign purchase, we may collect additional information that is explicitly described in the form and collected with your consent. We use Google and/or Jotform to manage all of our forms. You may find the privacy notice links for Google and Jotform here: 

Payment Data: We may collect data necessary to process a donation or payment if you make a purchase. All payment data is stored by PayPal, Square, and Network for Good. You may find their privacy notice links here: 

Social Media Login Data: We may provide you with the option to register on the DSDN app using your existing social media account details, like your Facebook account. If you choose to register this way, we will receive certain profile information about you from your social media provider. The profile information we receive may vary depending on the social media provider, but will often include your name, email address, friends list, and profile picture, as well as other information you choose to make public on the social media platform.


We will use the information we receive only for the purposes that are described in this privacy notice. Please note that we do not control, and are not responsible for, other uses of your personal information by your third-party social media provider. 

Information automatically created: 

We automatically collect certain information when you visit, use, or navigate our Services. This information does not reveal your specific identity (like your name or contact information) but may include device or usage information, such as your IP address, browser and device characteristics, operating system, language preferences, referring URLs, device name, country, location, and other technical information. This information is used to analyze data about web page traffic and improve our website in order to tailor it to visitor, donor, and member needs. We only use this information for statistical analysis purposes. 

Like many businesses, we also collect information through cookies and similar technologies. A cookie is a small file which asks permission to be placed on your computer's hard drive. Once you agree, the file is added and the cookie helps analyze web traffic or lets you know when you visit a particular site. Cookies allow web applications to respond to you as an individual. The web application can tailor its operations to your needs, likes and dislikes by gathering and remembering information about your preferences. Overall, cookies help us provide you with a better website, by enabling us to monitor which pages you find useful and which you do not. A cookie in no way gives us access to your computer or any information about you, other than the data you choose to share with us.

You can choose to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. This may prevent you from taking full advantage of the website.

The information we collect includes: 

  • Log and Usage Data: We use traffic log cookies to identify which pages of are being used.

  • Device Data: We collect device data such as information about your computer, phone or tablet when you access our Services. 

  • Location Data: We collect location data, such as information about your device’s location, which can be either precise or imprecise. How much information we collect depends on the type and settings of your device.


How Do We Use The Information We Collect?

We process your personal information for a variety of reasons, depending on how you interact with us and our Services, including:


  • To facilitate account creation and authentication in the DSDN app. We may process your information so you can create and log in to your account, as well as keep your account in working order.

  • To provide a personalized experience on the DSDN app. We may process your information to provide a personalized experience to you while using the DSDN app. 

  • To deliver and execute our programs and services for our member families. We may use your information to execute our programs and services, such as our welcome gift, care package program, and retreat registration.

  • To provide resources for medical and/or new parent outreach. We may process your name and address information in order to send DSDN materials and resources. 

  • To request feedback. We may process your information when necessary to request feedback and/or to contact you about your use of our Services. 

  • To identify usage trends and opportunities for improvement. We may process information about how you use our Services to better understand how they are being used so we can continue to improve them. 

  • To send you marketing and promotional communications. We may use collected email addresses to send promotional emails about fundraising campaigns, member parent events, or other information which we think you may find interesting using the email address which you have provided.  Any such emails will include the option to opt out of receiving future communications from us via email.

  • Internal record keeping. Specifically to promote compliance to IRS 501(c)(3) charitable tax-exempt status regulations.

  • Grant applications and other funding sources. At an aggregated level, we may use information to share about DSDN and the programs and services we offer to apply for grants and other funding opportunities. 

DSDN does not, under any circumstances, share, distribute, lease, or sell any personal information of member families, financial donors, or website visitors. Information collected to facilitate member services or financial donations is used only for the purposes expressly stated in this document.


What legal bases do we rely on to process your information?

We only process your personal information when we believe it is necessary and we have a valid legal reason (i.e. legal basis) to do so under applicable law, like with your consent, to comply with laws, to provide you with our Services, to protect your rights, or to fulfill our legitimate business interests.

If you are located in the EU or UK, this section applies to you. 

The General Data Protection Regulation (GDPR) and UK GDPR require us to explain the valid legal bases we rely on in order to provide your personal information. As such, we may rely on the following legal bases to process your personal information:

  • Consent. We may process your information if you have given us permission (i.e. consent) to use your personal information for a specific purpose. You can withdraw your consent at any time.

  • Performance of a Contract. We may process your personal information when we believe it is necessary to fulfill our contractual obligations to you, including providing our Services or at your request prior to entering into a contract with you. 

  • Legitimate Interests. We may process your information when we believe it is reasonably necessary to achieve our legitimate business interests, and those interests do not outweigh your interests and fundamental rights and freedoms. For example, we may process your personal information for some of the purposes described in order to:

    • Analyze how our Services are used so we can improve them to engage and retain users. 

    • Understand how our member families use our Services so we can improve their experience. 

  • Legal Obligations. We may process your information where we believe it is necessary for compliance with our legal obligations, such as to cooperate with law enforcement, body or regulatory agency, exercise, or defend our legal rights, or disclose information as evidence in litigation in which we are involved.

  • Vital Interests. We may process your information where we believe it is necessary to protect your vital interest or the vital interests of a third-party, such as a situation involving potential threats to the safety of any person.

If you are located in Canada, this section applies to you. 

We might process your information if you have given a specific permission (i.e. expressed consent to use your personal information for a specific purpose) or in situations where your permission can be inferred (i.e. implied consent). You can withdraw your consent at any time.

In some exceptional cases, we may be legally permitted under applicable law to process your information without your consent, including, for example:

  • If collection is clearly an interest of an individual and consent cannot be obtained in a timely way.

  • For investigations and fraud detection and prevention.

  • For business transactions provided certain conditions are met.

  • If it is contained in a witness statement and the collection is necessary to assess, process, or settle an insurance claim.

  • For identifying injured, ill, or deceased persons, and communicating with next of kin.

  • If we have reasonable grounds to believe an individual has been, is, or may be a victim of financial abuse.

  • If it is reasonable to expect collection and use with consent would compromise availability, or the accuracy of the information in the collection is reasonable for purposes relating to investigating a breach of an agreement or a contravention of the laws of Canada or a province.

  • If the disclosure is required to comply with a subpoena, warrant, court order, or rules of the court relating to the production of records.

  • If it was produced by an individual in the course of their employment, business, or profession, and the collection is consistent with the purposes for which the information was produced.

  • If the collection is solely for journalistic, artistic, or literary purposes.

  • If the information is publicly available as specified by the regulations.


When and with whom do we share your personal information?

We may share your data with third-party vendors, services providers, contractors, or agents (“third parties”) who perform services for us or on our behalf and require access to such information to do that work. When this happens, the details will be clearly communicated and the third party will have no right to use the information for independent purposes. 

Email Management (Constant Contact): When you sign up for email communications with DSDN, we share your email address with Constant Contact, our email management system. 

View Constant Contact’s privacy notice here:

Web Analytics (Google Analytics): We may share your information with Google Analytics to track and analyze the use of our Services. We utilize Google Analytics Demographics and Interests Reporting. To opt out of being tracked by Google Analytics, visit 

App Hosting and Management (Goji Labs): DSDN partners with Goji Labs to host and maintain the DSDN app. 

How long do we keep your information?

We will only keep your personal information for as long as it is necessary for the purposes set out in this privacy notice, unless a longer retention period is required or permitted by law (such as tax, accounting, or other legal requirements). No purpose in this notice will require us to keep your personal information for longer than a period of time in which users have an account with us.

When we have no ongoing legitimate need to process your personal information, we will either delete or anonymize such information; or, if this is not possible (for example, because your personal information has been stored in backup archives) then we will securely store your personal information and isolate it from any further processing until deletion is possible.

Links to other websites

Our website may contain links to other websites of interest. However, once you have used these links to leave our site, you should note that we do not have any control over that other website. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by this privacy statement. You should exercise caution and look at the privacy statement applicable to the website in question.


How do we keep your information safe and secure?

We are committed to ensuring that your information is secure. In order to prevent unauthorized access or disclosure we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect online. 


For processing online payments, DSDN employs the services of PayPal and Network for Good. We do not store any credit card information.

Despite our safeguards and efforts to secure your information, no electronic transmission over the Internet or information storage technology can be 100% secure, so we cannot promise or guarantee that hackers, cybercriminals, or other unauthorized third parties will not be able to defeat our security and improperly collect, assess, steal, or modify your information. Although we will do our best to protect your personal information, transmission of personal information to and from our Services is at your own risk. You should only access the Services within a secure environment. 


Do we collect information from minors?

We do not knowingly solicit data from or market to children under 18 years of age. By using the Services, you represent that you are at least 18 years old or that you are the parent or guardian of such a minor and consent to such minor dependent’s use of the Services. If we learn that personal information from users less than 18 years of age has been collected, we will deactivate the account and take reasonable measures to promptly delete such data from our records. If you become aware of any data we may have collected from children under age 18, please contact us using the details below. 

What are your privacy rights?

If you believe that any information we are holding on you is incorrect or incomplete, please email us as soon as possible. We will promptly correct any information found to be incorrect.

Opting out of marketing and promotional communications: You can unsubscribe from our marketing and promotional communications at any time by clicking on the unsubscribe link in the emails we send or by contacting us using the details below. 


Account Information: If you would like to review or change the information in your account or delete your account in the DSDN app, you can log into your account settings and update your user account directly. Upon your request to terminate your account, we will delete your personal information (name, email address, location, ethnicity) and any other content (posts and comments) will be anonymized or deleted. 

In some regions (like the EEA, UK, Switzerland, and Canada), you have certain rights under applicable data protection laws. These may include the right (i) to request access and obtain a copy of your personal information,(ii) to request rectification or erasure, (iii) to restrict the processing of your personal information, (iv) if applicable, to data portability, and (v) not to be subject to automated decision making. In certain circumstances, you may also have the right to object to the processing of your personal information. You can make such a request by contacting us using the contact details below. We will consider and act upon any request in accordance with applicable data protection laws. 

California Residents: The California Consumer Privacy Act (CCPA) provides that California residents have the right (subject to certain limitations) to:

  • Know and access the personal information we collect about them.

  • Correct the personal information we maintain about them.

  • Delete the personal information we collect about them.

  • Opt out of having their personal information sold for valuable consideration or shared for certain targeted advertising.

  • Limit the use and disclosure of sensitive personal information only to those certain purposes permitted by CCPA.

  • Non-discrimination for exercising their privacy rights. 

To exercise your right to limit use and disclosure of sensitive personal information, please contact us using the details below. 

Limitation of Liability

To the fullest extent permitted by applicable law, in no event will DSDN have any liability arising from or related to your use of or inability to use the DSDN application.

The foregoing limitations will apply whether such damages arise out of breach of contract, tort (including negligence), or otherwise and regardless of whether such damages were foreseeable of DSDN was allowed the possibility of such damages. Some jurisdictions do not allow certain limitations of liability so some or all of the above limitations of liability may not apply to you. 


You, the user, assume the sole risk of using and / or relying on the information and resources available in the application, and acknowledge that the information and services available in the application can not and may not under any circumstances be relied upon as medical advice.  


You agree to indemnify, defend, and hold harmless DSDN and its officers, directors, employees, agents, affiliates, successors, and assigns from and against any and all losses, damages, liabilities, deficiencies, claims, actions, judgments, settlements, interest, awards, penalties, fines, costs, or expenses of whatever kind, including reasonable attorneys’ fees, arising from or relating to your use or misuse of the Application or your breach of this Agreement, including but not limited to the content you submit or make available through this Application.

Governing Law 

This Agreement is governed by and construed in accordance with the internal laws of the State of Minnesota without giving effect to any choice or conflict of law provision or rule. Any legal suit, action or proceeding arising out of or related to this Agreement or the Application shall be instituted exclusively in the federal courts of the United States or the courts of the State of Minnesota. You waive any and all objections to the exercise of jurisdiction over you by such courts and to venue in such courts.


Do we make changes to this policy?

Yes, we update this privacy policy from time to time. If we decide to change our privacy policy, we will post those changes on this page. If you use the DSDN app, you will receive an email with a description of the changes. Policy changes will apply only to information collected after the date of the change.

How can you contact us about our privacy policy?

We welcome your questions, comments, and concerns about privacy. Please email us with any feedback regarding privacy or any other issue at or by mail at: 

Down Syndrome Diagnosis Network (DSDN)
PO Box 140
Stillwater, MN 55082
United States

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