Privacy Policy

Effective Date: July 10, 2016


Privacy Policy


Our commitment to privacy


As a donor to DC Outreach, Inc. (“DCO”), a visitor to our Website or a subscriber to our newsletters and updates, we understand you are entrusting this organization with certain, sensitive personal information. Protecting the privacy of that information, and maintaining your trust are of critical importance to DCO. This Privacy Policy explains our online information practices and the choices that you, as a user of this site, can make about the collection and use of your information. 


The information we collect

We may collect information about you in a variety of ways:

  1. You may directly provide information to us
  2. You may choose to allow a social networking service to share information with us
  3. We may gather other information when you visit our site


Information you directly provide

When you donate to us, ask to be added to our mailing list, ask to be contacted, ask to be connected to a family or medical provider, or otherwise communicate with us, you may directly provide us with information, including but not limited to the following:

  • Name
  • Email address and postal address
  • Gender, age or birthdate
  • Telephone number
  • Demographic information including marital status and number of children
  • Other information about you, your family or others, such as personal health information
  • Other information you affirmatively allow a third party service (such as Facebook) to provide to us


Information from social networking services

If you choose to access or make use of third-party social networking services (such as Facebook or Twitter), we may receive personal information about you that you have made available to those services, including information about your contacts on those services.  For example, some social networking services allow you to push content from our Site to your contacts or to pull information about your contacts so you can connect with them on our Site.  Some social networking services also will facilitate your registration or log-in for our Site.  Your decision to use a social networking service will always be voluntary.  However, you should make sure you are comfortable with the information social networking services may make available to our Site by visiting those services’ privacy policies.


Information we gather when you visit our site

Cookies are tiny data files that web sites commonly write to your hard drive when you visit them so that they can remember you when you visit. A cookie file contains information that can identify you anonymously and maintain your account's privacy. Our site uses cookies to maintain a user's identity between sessions so that the site can be personalized based on user preferences or a user's history. You can set your web browser to prompt you before you accept a cookie, accept cookies automatically or reject all cookies. However, if you choose not to accept cookies from this web site, then you may not be able to access and use all or part of this web site or benefit from the information and services which it offers.


How we use information

We use information we collect in the following ways:

  • To communicate with you regarding our services, to provide you with information, services, or other materials you request;
  • To process your offer to donate money to us;
  • To send you our newsletter;
  • To connect you to other users of DCO services if you request it;
  • To connect you to a health care provider if you request it;
  • To allow other users of DCO services to contact you, if you request this
  • To understand how our services are used and to improve them;
  • To send you important updates about our services or our organization including policy changes or membership news.


We do not trade, share or sell information we collect with anyone except as stated in this policy.  We will also not send you marketing communication or mailings on behalf of other organizations.


How we may share your information with others

We may share the information we collect with the following people or types of entities:


  • Volunteers.  To provide our services, we may share your information with volunteers. For example, we may share your name and contact information with volunteers if you have indicated you would like to be contacted by other DC-families.


  • Medical providers/advisors. We may share your personally identifiable information with medical providers/advisors if you ask us to do so, in connection with referring you to these medical providers/advisors.


  • Service providers.  Occasionally, we hire third-party service providers to help provide or improve the services we offer you, or to help facilitate volunteer events. Sometimes it is necessary for these providers to have access to your contact information. In those cases, we would secure your permission to do this, and also take reasonable steps to ensure that these providers do not use or otherwise disclose the contact information except for the purpose of fulfilling their service obligations to DCO.


  • DC Researchers. By choosing to participate in the Community Engaged Network for All (CENA) Survey and Registry, which is coordinated by Genetic Alliance and to which there is a link on, users can decide to input personal information and chose who can view the data. Survey participants can set individual privacy controls on the data they’d like made available to DC-researchers. All information available to researchers is de-identified.


  • Camp Sunshine. DCO may share with Camp Sunshine employees the names of families who have applied for travel scholarships.


  • We share aggregate information about our users with certain third parties. This information shows user activity as a whole rather than on an individual basis; such aggregate information cannot be used to individually identify you. We use aggregated information we collect about users to continue to improve our service for you.


User payment information

When individuals access the DCO Website to make a donation to DCO, they must provide payment information (such as credit card number and expiration date). DCO has partnered with Paypal to securely process your online credit card payment via  These transactions are subject to Paypal’s Privacy, Security & Disclosure Statement.  DCO does not collect any credit card information from you when using our site.



This Site is not directed to children and we will not request any information from children under 13 at this Site.


United States

If you are located outside of the United States and you contact us, please be advised that any information you provide to us will be transferred to the United States and that by submitting information you explicitly authorize this transfer and the processing of this information within the United States.


Your agreement to this policy

By using this Site, you signify your assent to all of the terms of this Privacy Policy.  If you do not agree with any term of this Privacy Policy please do not use this Site or submit any information.


Your control over your information

You always have the right to review and update the information that you previously provided to us at this Site.  You may contact us as described below to arrange this or to ask us to remove you from our list of email addresses to which we send newsletters.  You can also email us at to ask us to remove your name from our newsletter subscription database and ensure that you will cease receiving future newsletters from us


Do-not-track signals and similar mechanisms

Some web browsers may transmit “do-not-track” signals to the websites and other online services with which a user communicates.  There is no standard that governs what, if anything, websites should do when they receive these signals.  We currently do not take action in response to these signals. 



This Site contains links to other sites. DCO is not responsible for the privacy practices or the content of such web sites. We encourage our users to be aware when they leave our Website to read the privacy statements of each and every website that collects personally identifying information.  Our DCO registry is coordinated by Genetic Alliance and maintained by Private Access and is subject to their individual Privacy Policies.   Genetic Alliance’s Privacy Policy can be viewed at Private Access’ Privacy Policy can be viewed at



Changes to Policy

We may change or replace this Privacy Policy at our sole discretion at any time.  Please check back from time to time to ensure that you are aware of any updates or changes in this Privacy Policy.  


How To Contact Us

If you have any questions or concerns about this Privacy Policy or about our collection or use of information, please contact please contact us at:

DC Outreach, Inc.

1562 First Ave. #205-4093

New York, NY 10028-4004



Effective Date: July 10, 2016