This Privacy Policy explains what information the National Niemann-Pick Disease Foundation, Inc. (“NNPDF,” “we,” “us”) collects when you visit nnpdf.org, how we use it, and the choices you have. The short version: we measure how our website is used so we can make it better, and that is all. We do not sell, rent or trade your information, and we do not track you for advertising.
Effective date: October 22, 2026 | Last updated: October 22, 2026
NNPDF is committed to safeguarding the privacy of everyone who visits our website. We collect general, non-identifying information about our visitors, such as the number of visits and unique visitors and which pages are viewed, to help us improve the site.
Our Board of Directors, staff, consultants and volunteers are committed to protecting the privacy of every person who contacts NNPDF. Information you voluntarily provide to us by email or through forms on our website is never sold to other organizations. It may be shared with our Board of Directors, staff, consultants and volunteers only as needed to respond properly to your questions or concerns.
We know that many of our visitors are patients, parents and caregivers living with a rare disease. Questions about health are personal. That is why we have kept the data this website collects to the minimum we need to run it well.
This policy applies to nnpdf.org and to information we collect through it. It does not apply to websites run by other organizations, even when we link to them or when they handle a service for us (for example, our online donation pages, our online store, or embedded videos). Those services have their own privacy policies, described in the Third-Party Services section below.
When you visit our website, we use Google Analytics 4, a web analytics service provided by Google LLC, to understand how the site is used. Google Analytics uses small files called cookies, and similar technologies, to collect information such as:
We use this information only in aggregate, to understand which content is most helpful, find pages that need improvement, and plan new resources for families. We do not use Google Analytics to identify individual visitors, and we do not attempt to do so.
Google may process the data it collects as described in How Google uses information from sites or apps that use our services and the Google Privacy Policy.
Like nearly every website, our hosting provider automatically records basic technical information, such as IP address, browser type and the date and time of each request, in server logs. These logs are used only to keep the website secure, prevent abuse and fix technical problems. They are kept for a limited time and are not used to profile visitors.
We collect personal information only when you choose to give it to us. This can happen when you:
Depending on what you are doing, this may include your name, email address, mailing address, phone number and the content of your message. We use it only for the purpose you gave it to us, such as answering your question, sending the newsletter you asked for, processing your membership or donation, or organizing an event, and to keep records required by law.
You never have to share health information to use our website. If you choose to tell us about a diagnosis or your family’s experience, we treat it as confidential, use it only to respond to you and support your family, and never sell it or use it for advertising. We will not publish your story, name or photos without your permission. Please do not send detailed medical records through our website forms or email.
NNPDF is a patient advocacy organization, not a health care provider or health plan. The information you share with us is generally not covered by HIPAA, but we protect it with the care described in this policy.
To keep our forms free of spam, we use an anti-spam service (CleanTalk) that checks form submissions, including the email address and IP address of the person submitting, against known sources of spam. This information is used only for spam filtering.
We use the information described above to:
We do not use your information for automated decision-making or profiling that has legal or similarly significant effects on you.
We do not sell, rent or trade your personal information, and we do not share it with anyone for advertising. We share information only in these limited situations:
We may share aggregated statistics that do not identify anyone, such as the total number of visitors to a page, in reports to our Board, funders or partners.
Cookies are small text files that a website stores in your browser. Our website uses:
We do not use advertising, retargeting or social media tracking cookies. When you play a video embedded from YouTube or Vimeo, or use a page hosted by one of our service providers, that service may set its own cookies under its own privacy policy.
You can block or delete cookies in your browser settings at any time. Blocking essential cookies may stop some features, such as forms, from working.
To stop Google Analytics from collecting data on any website you visit, install the Google Analytics Opt-out Browser Add-on.
Wherever you live, you may ask us to:
Residents of some states, including California, Colorado, Connecticut, Delaware, Maryland, Minnesota, New Jersey, Oregon, Texas, Virginia and Washington, may have additional rights under their state’s privacy laws, such as the right to opt out of the sale of personal data, targeted advertising or profiling. NNPDF does not engage in any of these activities.
To make a request, email [email protected] or call 877-287-3672. We may need to confirm your identity before acting on your request. You may use an authorized agent to make a request on your behalf. We will respond within 45 days, and we will never treat you differently for exercising your privacy rights. If we decline your request, you may appeal by replying to our decision, and we will respond to your appeal within the time required by law.
Some state laws, such as Washington’s My Health My Data Act and Nevada’s consumer health data law, give special protection to information that identifies a person and relates to their health. Because our website is about Niemann-Pick disease, we want to be clear about how we handle this:
Our website is for patients, families, caregivers, clinicians, researchers and supporters of all ages. It is not designed for young children to use on their own, and we encourage parents and guardians to explore it together with their children.
We do not knowingly collect personal information from children under 13 without the consent of a parent or guardian, as required by the Children’s Online Privacy Protection Act (COPPA). Children under 13 should not submit forms, sign up for email or send us personal information without a parent or guardian. If you believe a child has sent us personal information without your consent, please contact us and we will delete it promptly.
When families share stories or photos of their children with us, we use them only with a parent or guardian’s permission, and you may ask us to remove them at any time.
Our website links to and works with services run by other organizations. When you use them, their own privacy policies apply, and NNPDF is not responsible for their privacy practices or content. These include:
Online payments are handled directly by our payment processors. NNPDF does not receive or store your full credit card number.
NNPDF has pages and groups on social media platforms. Anything you post on public social media, including personal information, can be seen, collected and used by others. Those platforms control how your information is used under their own policies. NNPDF is not responsible for the content, viewpoints, ideas, proposals, information or other intellectual property that others post on these platforms.
We use reasonable administrative, technical and physical safeguards to protect information, including encrypted (HTTPS) connections across our website, limited access to personal information, and trusted service providers. No website or method of transmission is completely secure, so we cannot guarantee absolute security. If we learn of a security breach that affects your personal information, we will notify you as required by law.
We keep personal information only as long as we need it for the purpose it was collected, or as required by law. For example:
NNPDF is based in the United States, and our website is hosted in the United States. If you visit from another country, your information will be processed in the United States, where privacy laws may be different from those where you live. We welcome families from around the world, and we will honor reasonable requests to access, correct or delete your information wherever you live.
If you have a disability and need this policy in a different format, such as large print or read aloud over the phone, please contact us and we will be glad to help.
We may update this Privacy Policy from time to time, for example when we add a new service or when the law changes. When we do, we will post the new version on this page and change the “Last updated” date at the top. If we make a significant change in how we use personal information, we will make that clear on our website before the change takes effect.
If you have questions about this Privacy Policy or how we handle your information, please contact us:
National Niemann-Pick Disease Foundation, Inc.
P.O. Box 49
Fort Atkinson, WI 53538-0049
Phone: 877-287-3672
Email: [email protected]
Please also see our Terms of Use.
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