Effective Date: July 10, 2016
Our commitment to privacy
The information we collect
We may collect information about you in a variety of ways:
- You may directly provide information to us
- You may choose to allow a social networking service to share information with us
- 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:
- 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
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 www.dcoutreach.org, 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 dcoutreach.org. 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.
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
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 firstname.lastname@example.org 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.
Changes to Policy
How To Contact Us
DC Outreach, Inc.
1562 First Ave. #205-4093
New York, NY 10028-4004
Effective Date: July 10, 2016