National Birth Defects Prevention Network, Inc Privacy Policy

National Birth Defects Prevention Network, Inc Privacy Policy

Last updated: May 29, 2018

The National Birth Defects Prevention Network, Inc., (NBDPN, aka, ‘Network’, ‘we’, ‘us’ and ‘our’) values our members and partners.  We know that your privacy is important.  This Policy describes what personal information (‘Personal Data’) we collect and save and how we process it on our website at (the ‘Website’).  By being a member of the Network, registering for our meetings and events, signing up for our services, and using our Website, you consent to our collection, use, disclosure, and all other types of processing of your Personal Data, as described in this Policy. Please read this Policy to learn more about how we process your Personal Data.
Information We Collect
Personal Data
In the course of maintaining the Network, the Personal Data we collect can include:
  • Contact information, such as first and last name, personal and business email addresses, phone numbers, and residence and work addresses;
  • Events registration and attendance information;
  • Purchases and donations;
  • Employer
  • Job title or profession
  • Project and committee participation; and
  • Any other type of information we may ask you for or that you may choose to provide to us
NBDPN controls the Personal Data we collect and process.  The Network’s legal grounds for processing Personal Data include:
  • Your consent;
  • The need to perform our obligations under a contract or to perform related pre-contractual duties;
  • The legitimate interests pursued by us, such as member recruitment; and
  • Any other ground, as required or permitted by law in the specific respective context.
Please note that you may withdraw your consent at any time by contacting us at  This will not change the status of your consent prior to withdrawal. 

Information We Do Not Collect:
Financial Information: our website does not collect financial information.  For your convenience, we provide a link to our PayPal account. We may also provide links to additional business tools, such as those for event management and registration processing.  These are provided for convenience.  They are not managed or maintained by us.  Please refer to the Terms of Use and Privacy Policy for those applications and service providers if you have questions.
Social Information: the Network does not collect Personal Data such as sex, age, race, ethnicity, and income.  We collect information about members’ profession and educational degrees completed.  We collect this information to better understand the make-up of our membership and enhance collaborative partnerships. 

How We Collect Information
We may receive your Personal Data through our Website or through other communications.  In particular, we receive Personal Data when:
  • You sign up as a member of the Network using our Website;
  • You interact with our Website when, for example, you login to update your member record, use the member directory or other member resources;
  • You provide personal information by any other means that we enter into our member management system, for example, participating in our surveys and for meeting or event registration.
We may also receive your personal data from third parties, in which case, we will notify you, where required by law, without undue delay.
A ‘cookie’ is a small file stored on your device which potentially contains (or may be linked to) information about you, your device, and your use of our Website.  We may use cookies to enable your use of the Website. The use of cookies is industry standard.  You browser may be set to accept cookies.  If you would prefer not to accept cookies, you can alter the configuration of your browser to reject all cookies or some cookies.  Note, if you reject certain cookies, you may not be able to access all of the features of our Website. 
For more information, please visit
Aggregate Information
We use Google Analytics to identify key data points such as top content and traffic sources.  Our Google Analytics account does not grant us access to your Personal Data.
IP Addresses
NBDPN may use your IP address to help administer, for statistical metrics used to track website and social media visitor traffic, and to evaluate survey completion.
How We Use Information
We may use your Personal Data to:
  • Register you as a member of the Network;
  • Enable you to use Website features, such as our member directory and other members only resources;
  • Handle dues and fee billings for membership, events and other Network business;
  • Track member involvement, activity, and dues/fee payment;
  • Track donations and purchases;
  • Track event attendance and committee membership;
  • Track proposal submissions;
  • Track online learning participation;
  • Maintain financial records;
  • Respond to your inquiries, requests, and questions; and
  • Send newsletters, announcements, alerts and marketing materials
How We Store Information
The Network controls the Personal Data that we process. We have implemented and will maintain technical, organizational, and physical security measures that are reasonably designed to help protect your Personal Data from unauthorized processing, such as unauthorized access, disclosure, alteration, or destruction.  We will maintain your member records for 18 months from the date of your final unpaid invoice. 

As an active member, you have the right to access, update, and correct your member record. Go to and login. If your membership has lapsed, or for any other reason, you may contact us with a request regarding your personal information at
Information Access
Third Party Access
The Network does not sell or rent your Personal Data. However, in order to operate our Website and provide you with our services, we may share your Personal Data with other entities.  Such third parties may include those providing:
  • Association management software;
  • Web development services;
  • Hosting services;
  • Cloud storage services;
  • IT support services;
  • Analytics services;
  • Customer support services;
  • Payment services; and
  • Any other type of external services we might need for us to be able to operate our Website and to provide you with our services.
We may share your personal information with these vendors, solely to enable them to perform the services for us.  In providing such Personal Data, we require that those third-party vendors maintain at least the same level of security that we maintain for your Personal Data.
If we would need to transfer your Personal Data to third countries, we would ensure that this would be subject to appropriate safeguards and other requirements, as stated in applicable laws.
Email Privacy
The Network depends on email as its main source of member communication.  Your submission of contact information serves as your consent to be contacted for Network business and other legitimate NBDPN purposes.  The Network invites you to submit additional contact options such as a secondary email, preferred telephone number and physical address.  We will not sell or rent contact information. You may opt out of electronic newsletters and solicitations by clicking ‘Unsubscribe’ or by contacting us at
NBDPN may disclose your Personal Data:
  • To the extent required by law or if we have a good faith belief that such disclosure is necessary, in order to comply with official investigations or legal proceedings initiated by governmental and/or law enforcement officials, or private parties, including but not limited to: in response to subpoenas, search warrants, or court orders;
  • If we sell or transfer all or a portion of our company’s business interests, assets, or both, or in connection with a corporate merger consolidation, restructuring, or other company change; and
  • To our subsidiaries of affiliates, only if necessary for business and operational purposes.
We reserve the right to use, transfer, sell, and share aggregated, anonymous data, which does not include any Personal Data, about our Website users as a group for any legal business purpose, such as analyzing usage trends and seeking compatible advertisers, sponsors, clients and customers.
Website Visitors
Proprietary Information
NBDPN works with our partners to provide resources for public health professionals, providers and the general public.  These resources are offered ‘as is’, at no charge, for download, printing, and sharing.  Member resources are available to registered members. 
External Links
The Network provides links to many online resources as a courtesy to our members, partners and stakeholders.  We strive to maintain current content, but we make no guarantees.  We do not monitor the content and are not responsible for the content of external sources. 
If you have concerns about any of the links we provide, please contact us at
NBDPN Social Media Accounts
NBDPN maintains Facebook, twitter and Instagram accounts.  We provide links to all, as well as a twitter feed on our Website.  We follow the terms of service for these social media platforms and expect all other users to monitor and adhere to the terms of service as well.  Social media platforms are public forums.  There is no expectation of privacy when using social media.  We monitor the Network’s social media accounts and strive to maintain and share content that is consistent with the NBDPN’s mission and vision.
If you have concerns about our social media content, please contact us at
NBDPN Business Tools
NBDPN maintains various accounts with vendors such as SurveyMonkey, PayPal, and Square, in order to administer Network business.  Please refer to the Terms and Conditions and Privacy Policy of these service providers if you have questions about their practices.
How to Manage Your Record
You have the right to access, update, and correct your member record.  Go to and login. 
If we process your Personal Data, you may have the right:
  • to ask that we limit our processing of your Personal Data;
  • to object to our processing of your Personal Data; and
  • to ask for your Personal Data to be exported in a machine-readable format.
If your membership has lapsed, or for any other reason, you may contact us at any time with a request regarding your Personal Data at
Additional Information
Privacy of Children
Our Website is not directed at, or intended for use by, children under the age of 13.  We do not knowingly allow anyone under 18 to provide any Personal Data on our Website.  Children should always get permission from a parent or guardian, before sending Personal Data over the Internet.  If you believe your child may have provided us with Personal Data, you can contact us and we will delete that Personal Data. 
Supervisory Authority Oversight
If we process your Personal Data, you may have the right to lodge a complaint with a data protection regulator in one or more of the European Union Member States.
Policy Changes
We may update this Policy from time to time by posting a new version on this web page.  You should visit this page occasionally to be sure you agree with any changes.  We will post our revised Policy on this web page and update the ‘effective’ date above to reflect the date of the changes.  By continuing to use our Website after we post the changes, you agree that you accept the Policy as modified.

Contact Us

If you have a complaint, dispute, or questions regarding this Policy or our treatment of your Personal Data, please contact us at:

General Contact

NBDPN Privacy and Security

Please allow up to 30 days for us to reply.