Neurofibromatosis (NF) Midwest is committed to protecting your privacy. This Privacy Statement explains the types of personal information we may collect from website visitors and other individuals with whom we interact, whether online or offline, why we collect it, and with whom we may share it. It also describes how we protect your personal information and how you can contact us with any questions.
NF Midwest is a nonprofit organization committed to improving the lives of children, adults, and families impacted by neurofibromatosis. Our continued focus and foundation is on Clinics, Awareness, Research, Education and Support in the states of Illinois, Indiana, Iowa, Kentucky,
Wisconsin, and the eastern half of Missouri.
NF Midwest C.A.R.E.S.!
What We Do That May Involve Personal Information
What’s in the Scope of This Privacy Statement
The following services are among those NF Midwest is currently providing or may provide to website visitors, members of the public, patients and families who contact us, donors, those who attend our events, grant applicants and recipients, those who register at www.nfmidwest.org (“the Site”), and others.
What’s Not in the Scope of This Privacy Statement
Information You Provide to NF Midwest and Your Choices
You are welcome to make use of the educational content on the Site without providing any personal information. However, you may choose to provide us with personal information via the Site. For example, if you choose to sign-up through www.nfmidwest.org/contact in order to receive information from NF Midwest or you may make donations at www.nfmidwest.org/donate. You will need to provide certain personal information such as name, address, telephone number, email address, health information or other descriptive information.
If you choose to use a credit card to make donations or pay to attend events, you will need to submit your credit card through the Site. (If you prefer, you can send a check instead of donating online.)
If you submit your personal information to register, make a donation, volunteer, send us questions and/or otherwise interact with us, we may later send you donation solicitations or follow-up communications related to NF or NF-related developments, events, or updates. If you wish to stop these communications, please email .
Some of the fundraising sections of our Site make it convenient for you to solicit donations to NF from your own friends and contacts. If you choose, you can provide name and contact information for your contacts you want to email to ask for donations. NF Midwest (or NF Midwest’s vendor) will retain your friends’ contact information for your convenience for your own future fundraising efforts, but NF Midwest will not seek contact or donations from your contacts unless they actually become donors themselves.
We use personal information about individuals, as well as anonymous, statistical information derived from personal data, to improve, measure, or expand our services and for administrative and operational functions. We will use personal information only for purposes consistent with this Privacy Statement.
Sometimes NF Midwest may wish to share the stories of those within our community publicly in order to help others. Before we share your personal information, however, for this purpose or any other purpose not described in this Privacy Statement, we will obtain your consent.
Special Provisions Related to Fundraising
In addition to what is described elsewhere in this Privacy Statement, NF Midwest has some provisions applicable to personal information connected to fundraising operations.
Information You Share Through the Site
Our Site may create opportunities for you to share information with others through message boards, blogs, social media, apps, etc. Please remember any information you disclose in these areas becomes public information. Therefore, please exercise discretion in deciding what information to post or share.
Non-Personal Information We Collect
We may store IP addresses for fraud detection and prevention purposes.
Social Plug-In Data
The Site may use interfaces with social media sites like Facebook, Google+, LinkedIn, Twitter, or others. If you chose to “like” or share information from the NF Midwest’s Site through these services, you should review their privacy policies. If you are a member of a social media site, the interfaces may allow the social media site to connect your Site visit to your personally identifiable information.
Personal Information We May Share
If you provide personal information to us via the Site, we may share it with service providers who assist us in activities such as technology or communications management. These providers are not authorized to use or disclose the information except as necessary to perform services on our behalf or to comply with legal requirements.
We might share personal information if we were to sell, assign, license, or transfer all or a portion of our organization or its assets, in which case we would make commercially reasonable efforts to contractually require the recipient to treat the information in accordance with this Privacy Statement. We might also disclose information about you (i) if required by law, subpoena, court order, or legal process, (ii) to law enforcement or other government authorities, or (iii) if we believe disclosure is necessary or appropriate to prevent serious physical harm or in connection with an investigation of or legal action involving illegal or fraudulent activity.
Protecting Personal Information
We are committed to maintaining the security of personal information. Although it is not possible to guarantee that security measures employed will be fully sufficient to protect personal information, we use appropriate administrative, technical, and physical security measures intended to protect against loss, misuse, improper access, disclosure, alteration, or destruction of personal information.
If you register with NF Midwest for any services that require a username and password, we encourage you to take strong precautions to protect these credentials. While we strive to protect your personal information, we cannot ensure or warrant the security of any information you transmit to us or receive from us. This is especially true for information you transmit to us via email. We review our data security arrangements regularly.
Links to Other Sites
We may provide links to other websites for your convenience and information, but we do not operate these websites and are not responsible for their privacy practices or content. Please contact those websites directly if you have any questions about their practices.
This Site is intended for use by adults. If you are between the ages of 13 and 18 years old, you may use this Site only if: (i) your use has been approved by your parent or legal guardian, (ii) you use the Site under his or her supervision, and (iii) he or she has agreed to the Terms (and any additional registration agreements, if applicable) on your behalf.
If you are the parent of a minor, you may use the Site and agree to the Terms on behalf of the minor. By doing so, you warrant that you have the legal capacity to act on the minor’s behalf and you agree that the provisions of the Terms (and any additional registration agreements, if applicable) that are applicable to you are equally applicable to the minor.
Under no circumstances may a minor under the age of 13 use the Site.
Changing and Accessing Your Information
If you would like to access or change information you have submitted to us, please email us at or write to us at NF Midwest, 473 Dunham Rd, Suite 3, St. Charles, IL 60174.
If you would like to request the deletion of personal information you have previously submitted to NF Midwest, please email us at or write to us at NF Midwest, 473 Dunham Rd, Suite 3, St. Charles, IL 60174. Subject to applicable law and best practices, we will make commercially reasonable efforts to delete or suppress your personal information. Please be advised that we are required by law to retain certain records, such as donation and other records.
How to Unsubscribe From NF Midwest Communications
If you do not wish to receive further emails, postal mail, or other communications from NF Midwest please email us at or write to us at NF Midwest, 473 Dunham Rd, Suite 3, St. Charles, IL 60174.
It is our policy to honor any no-solicitation request as quickly as possible. We are legally required to internally retain records related to donations made, so we cannot delete your name upon request. Instead, we flag records internally so we can honor no-solicitation requests by suppressing messages as requested.
Changes to This Notice
We may update this Privacy Statement at any time and, if so, we will post the new effective date below. We expect that most changes will only be editorial in nature or reflect changes in the services we provide. However, in the unlikely event that we would ever make material changes that would permit us to share your information more broadly than we have previously described, we would post a prominent announcement on this site and/or ask for your consent.
Your continued use of the Site after the effective date of the new Privacy Statement constitutes your consent to the new Privacy Statement.
NF Midwest welcomes your comments. If you have any questions or comments about our Privacy Statement or our information practices, please contact us at or write to us at NF Midwest, 473 Dunham Rd, Suite 3, St. Charles, IL 60174.
The effective date of this Privacy Statement is February 26, 2018.
The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.