Privacy Policy & General Data Protection Regulation (GDPR)

Who we are

The mission of the National Neutropenia Network is to promote awareness, education, and research, and to provide a support system for patients with severe chronic neutropenia (SCN) and their families through a national resource network.

What personal data we collect and why we collect it

Subscribe to our mailing List
Subscribers will need to complete form if they wish to receive e-newsletters, postcards, and mailings.

For mailing purposes, we need your name, mailing address, and email.

We ask for your phone number for customer service purposes. If you do not want to share it with us that is okay; we will contact you via email.

Questions in regards to your neutropenia condition, age and diagnosis, are asked are for the NNN’s records and will not be shared along with your contact information. It’s for research purposes only. These questions are not required to subscribe to our mailing list. This information may be sent to the Severe Chronic Neutropenia Registry (SNCIR) for research purposes but will not be shared beyond this group.

By clicking the subscribe button, you are explicitly choosing to share your information you provided with the National Neutropenia Network.

The National Neutropenia Network will not share nor sell our contact information.
You will remain on our mailing lists until you unsubscribe or you contact us to remove you from them.

How long we keep your data
The National Neutropenia Network will keep your data until you ask us to remove it from our records or until the National Neutropenia Networks dissolves.

Update/remove your information

Remove from our Record
If you want your information deleted from our records, please contact us and we will remove the information from our records completely.

If your contact information has changed, please let us know and we will update it.

Who has access to the data
Those who work for the National Neutropenia Network has access to your data. We do not sell any contact information to third parties.

Security Breach
In the event of a hack or security breach, we will let our subscribers know about it as soon as we determine something has occurred. This will be sent out via email to our subscribers.

Contact forms

Cookies
If you leave a comment on our site you may opt-in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year.

If you have an account and you log in to this site, we will set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser.

When you log in, we will also set up several cookies to save your login information and your screen display choices. Login cookies last for two days, and screen options cookies last for a year. If you select “Remember Me”, your login will persist for two weeks. If you log out of your account, the login cookies will be removed.

Embedded content from other websites
Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.

These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracing your interaction with the embedded content if you have an account and are logged in to that website.

Analytics

Who we share your data with
Questions in regards to your neutropenia condition, age and diagnosis, are asked are for the NNN’s records and will not be shared along with your contact information. It’s for research purposes only. These questions are not required to subscribe to our mailing list. This information may be sent to the Severe Chronic Neutropenia Registry (SNCIR) for research purposes but will not be shared beyond this group.

By clicking the subscribe button, you are explicitly choosing to share your information you provided with the National Neutropenia Network.

The National Neutropenia Network will not share nor sell our contact information.
You will remain on our mailing lists until you unsubscribe or you contact us to remove you from them.

What rights you have over your data
If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.

Where we send your data
Visitor comments may be checked through an automated spam detection service.

What third parties we receive data from
We do not receive any data from third parties.

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