NMDP online privacy statement

We provide this Online Privacy Statement to make you aware of our privacy policy and practices and of the choices you can make about the way your information is collected and used. To make this notice easy to find, we make it available on the home page and from the bottom of every page on the website.

Personal information

This website collects personally identifiable information only if you voluntarily submit it. On some pages, you can update your contact information, choose to provide an online contribution, order materials, join the registry, answer health questions or submit other requests. The personal information collected on these pages is your name and contact information. In some cases, you may submit additional information as needed to complete your request.

If you register online for the NMDP Registry^SM, we require that you provide certain personally identifiable information including your name, health information, address and phone number. We need this information to process your registration and to contact you in connection with that registration. You may also be asked to provide additional health and contact information online if you are identified as a possible match for a patient.

If you choose to make a financial contribution to NMDP through its fundraising partner, NMDP Foundation^SM, information related to your contribution—whether made online or offline—will be governed by this Online Privacy Statement. The transaction will be handled by a contracted third party payment card processor—who is compliant to the Payment Card Industry data security standards. This payment processor will not share your personal information other than with the NMDP Foundation and NMDP. If you provide credit card information to make a financial contribution, that information is used solely for the purpose of completing that specific transaction and is not retained by NMDP.

When you make a financial contribution to NMDP, we may on occasion share information related to your financial contribution with third parties for the purposes of comparing your donation information in aggregate with the information of others to identify important trends that will help improve our fundraising efforts and expand our programs and services for patients. In addition, NMDP may also share such transactional data on an aggregated basis (which will not identify any particular user) with third parties, such as vendors, advertisers or business partners. These third parties may use this information to advise other third parties in their marketing and fundraising campaigns that may share your name and address, but not associated personal contribution details information, with those third parties.

We may also ask you to voluntarily provide us with information regarding your experience with cancer, personal or professional interests, demographics and contact preferences to tailor our subsequent communications with you and continuously improve our website and services.

Personal genetic information

If you volunteer to join the NMDP Registry, you will be provided a cheek swab kit with instructions on providing a tissue sample to NMDP. NMDP will use your tissue sample to collect only the specific genetic typing information relevant to the success of a blood stem cell transplant. This genetic information will be stored along with your donor identification number within the registry. 

As a member of the registry, your genetic and personal identifying information may only be used or disclosed, as detailed in the consent, to (1) coordinate blood stem cell transplants for matching patients, or (2) for purposes related to the operation of the NMDP and its affiliates and subsidiaries.*

We do not sell, rent or lease member information to third parties. NMDP and its network centers follow strict rules designed to prevent unauthorized sharing of personal information. Absent a valid court order from law enforcement, your information will not be shared with law enforcement agencies. 

Web statistics

As you browse through this website, the NMDP collects some non-personally identifiable data, such as:

• The type of browser used to access the site 
• The date and time of your visit
• The pages you visited 
• The address of the website that referred you if you clicked a link to get to this site

The NMDP collects this information for statistical purposes and for evaluating this website to make it more useful to visitors. If you have signed up to receive information by email from NMDP, the email may contain a "click-through" URL. When you click one of these URLs, you pass through our web server before arriving at the webpage that is your destination. We track click-throughs to help us determine your interest in particular topics and measure the effectiveness of our communications.

Web browser tracking technologies: Use of cookies & tracking pixels

Several NMDP websites use cookies or tracking pixels to provide a personalized experience to our website visitors. A cookie is a small text file that contains no personally identifying information and that is placed into the memory of your browser. If the lifetime of the cookie extends beyond the time you spend at the site, the file is saved for future reference and is a “persistent cookie.” A tracking pixel is a very small 1x1 pixel image that is stored by a web browser and serves a similar function as a cookie.

These tools allow us to include capabilities that provide a better user experience, make the website easier to navigate, and allow us to gather accurate information about the site so we can determine:

• How many visitors arrive
• How many are new versus repeat visitors
• How often a visitor has visited

We also may use tracking technologies for "retargeting" in our internet advertising campaigns so that third party vendors such as Google can show you advertising about NMDP as you browse the internet. Retargeting is a marketing aid that identifies you as a previous visitor to the NMDP website and targets you for specific outreach messages, encouraging you to revisit our website or consider donating. Again, these technologies capture only non-personal information (you will be anonymous).

Most browsers are initially set up to permit the use of web browser tracking technologies, but if you prefer, you can usually set your browser to refuse them or to notify you when you receive a new cookie or tracking pixel. You can also opt out of third-party digital tracking and advertising at the Digital Advertising Alliance WebChoices (Opens in a new tab) website. Most browsers can be set to send a special signal to websites telling them not to track the user’s activities. Currently, we do not respond to “do not track” signals. Therefore, our websites may track and collect information about your online activities, despite any “do not track” signals we may receive.

When you choose to submit personally identifiable information (PII) to the NMDP, we use your information only for the purposes for which you submitted the information, or as otherwise described in this Privacy Statement. Learn more at "Who we share your information with."

Change of address requests

All information submitted to NMDP via the Update Your Contact Information form will be forwarded from NMDP World Headquarters by email to the donor center with which you are registered. A copy of the email is retained at NMDP World Headquarters for back up purposes. Learn more at “Who we share your information with.”

Preliminary search requests

Physicians can submit preliminary search requests for their patients through this website. The contact information and patient diagnosis and demographic information submitted in a preliminary search request are entered into MatchSource® and a preliminary search for potential donors is initiated. MatchSource is the secure, proprietary database system NMDP uses to facilitate all patient searches, track patient histories and maintain the NMDP Registry of potential volunteer donors. Search results may be returned by email, fax or mail.

Other requests

When you submit other requests, such as materials requests, the NMDP uses your name and contact information for the sole purpose of completing your request. If you request materials, your name and contact information are kept in a limited-access database and are not sold or given to any other organization outside of the NMDP, other than to our contracted vendors solely for the purpose of fulfilling your request.

NMDP will not sell, rent or lease your personally identifiable information to others, other than as specifically described herein.

Unless we have your permission or are required by law, any personal data you provide us online will be shared only with other NMDP entities and/or business partners who are acting on our behalf to complete activities for purposes related to the operations of NMDP, NMDP Foundation, and the NMDP Registry. Such NMDP entities and/or business partners, including those located in other countries, are required by agreement to protect the privacy of your personally identifiable information as set out in this Privacy Statement.

The NMDP will not use or share the personally identifiable information provided to us online in ways unrelated to the ones described above without letting you know beforehand and offering you the opportunity to withhold your consent for NMDP to use your information in this way.

The NMDP is committed to ensuring the security of your information. To prevent unauthorized access, maintain data accuracy and ensure the appropriate use of information, we have put in place reasonable physical, electronic and managerial procedures to safeguard and secure the information we collect online. This includes the use of modern encryption software, which encrypts the information you submit to keep it secure during transmission. In addition, we comply with applicable laws to safeguard your non-public personal information against misuse, loss or unauthorized modification, disclosure or access.

Protecting privacy of children and minors

NMDP does not collect the medical, genetic or other highly sensitive personal information of minors. Further, we do not knowingly collect personal information from children (i.e., minors under the age of 13). If a child under the age of 13 has provided us with personal information, we ask that a parent or guardian contact our Data Privacy Office at dpo@nmdp.org (Opens in a new tab). If it comes to our attention that we have collected personal data from a minor under the age of 13, we may delete this information without notice.

We do however, on occasion, interact with minors ages 13+ (e.g., high school students) that wish to participate in our mission. In these circumstances, collecting the basic contact information of these minors is necessary. We recognize the particular importance of protecting privacy where children are involved. Where we knowingly collect personal information of children ages 13 or older, we require the consent of the child’s legal parent or guardian prior to collecting or processing the information.

Our online services are United States-based and are controlled, operated and administered by NMDP from its offices within the United States of America, and are made available to you on an unsolicited basis, without any marketing or promotion regarding these online services to you from NMDP or its personnel. This Online Privacy Policy is provided in accordance with and subject to applicable U.S. law. If you decide to continue to access our online services from your location outside the United States, you hereby agree that your use of those services is subject to this Online Privacy Policy and your personal information will be transferred or processed in the United States.

For our partners who operate in the European Union (EU), NMDP has invested in the operational processes that meet the requirements of the European Model Clauses for the transfer of personal data to processors. Our contract with you includes the Model Clauses, referred to as Standard Contractual Clauses that make specific guarantees around transfers of personal data for specific services. This ensures that our partners can transfer personal data from the European Economic Area (EEA) to NMDP.

We reserve the right to update or supplement this Online Privacy Policy at any time. Therefore, we recommend that you review this Online Privacy Policy page regularly for updates. The Effective Date of this Online Privacy Policy, as stated above, indicates the last time this Online Privacy Policy was updated.

Continuing to use this website after we have updated the Online Privacy Policy signifies your acceptance of the updated terms. We may also elect to notify you through additional means, such as by sending you an email

If you have comments, concerns or questions about our privacy policy or our privacy and security practices, including requests for data deletion, please contact us at: 

Privacy Office
NMDP
500 N 5th St.
Minneapolis, MN 55401-1206
dpo@nmdp.org