Privacy Policy

Introduction

The NORSE Institute values your privacy. This Privacy Policy explains how we collect, use, store, and share personal data when you visit our website or interact with us online.

By using our website, www.norseinstitute.org, you agree to the practices described in this policy. We encourage you to read it carefully.

About Us

The NORSE Institute is a United States–based 501(c)(3) charitable organisation operating through the fiscal sponsorship of CURE Epilepsy. Our mission is to advance understanding, treatment, and support for those affected by New Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES).

Our website provides resources for patients and families, shares scientific updates, and supports fundraising and advocacy efforts.

Comments & Form Submissions

When you leave comments or submit forms on our website (such as contact forms, donation forms, or resource requests), we may collect personal data including:

  • Your name

  • Email address

  • Mailing address (if applicable)

  • Phone number (if provided)

  • Any other information you voluntarily submit

We use this information to respond to your message, provide relevant resources, and communicate with you as needed. We do not sell or rent your personal information.

User-Submitted Content

We welcome contributions from clinicians, researchers, and medical professionals who wish to share their expertise to expand and refine the knowledge base on NORSE (New Onset Refractory Status Epilepticus) and FIRES (Febrile Infection-Related Epilepsy Syndrome).

When you submit content such as articles, podcasts, insights, or resources or express interest in being included in the NORSE Medical Directory through our contact page, we collect and process your personal information in accordance with this privacy policy.

Your submitted information will be used to evaluate and potentially publish your contributions, manage the directory, and communicate with you regarding your submission. We will handle your data securely and will not share your personal details with third parties without your explicit consent, except where required by law.

Please note that content submissions may be reviewed, edited, and stored on our systems. We will not publish identifiable personal data without your permission.

Cookies

Our website uses “cookies,” small files that your browser stores on your device, to improve your browsing experience and track how users interact with our content.

Cookies may be used to:

  • Remember your preferences

  • Measure website performance

  • Support analytics tools (e.g., Google Analytics)

  • Assist in fundraising efforts or campaign tracking

You can choose to disable cookies in your browser settings, but this may affect how the website functions for you.

Embedded Content from Other Websites

Pages on this site may include embedded content (e.g. videos, articles, images, donation widgets). Embedded content from other websites behaves in the same way as if you visited the external site directly.

These third-party sites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with the content. Examples include YouTube, PayPal, and Squarespace-hosted forms.

We encourage you to review the privacy policies of any third-party services you interact with through our site.

How We Use Your Data

We use the information we collect for the following purposes:

  • Fundraising and Donations: To process your donation, issue tax receipts, and keep you informed of campaign updates or matching gift opportunities.

  • Communications: To send newsletters, research updates, event information, or respond to your questions. You can opt out of email communications at any time.

  • Data Analytics: To understand how users interact with our site, improve user experience, and track the effectiveness of outreach campaigns.

  • Research Sharing (Non-Identifiable Data): We may share aggregated, non-identifying data with research collaborators or in grant reports. We do not share personally identifiable data with third parties unless required by law or with your explicit consent.

Children’s Privacy

Our website is not intended for children under 13, and we do not knowingly collect personal data from children without parental consent. If you believe we have received information from a child under 13, please contact us so we can delete it.

Your Rights and Choices

Depending on your state of residence, you may have the right to:

  • Request a copy of your personal information

  • Correct or update your information

  • Ask us to delete your information

  • Opt out of certain data uses (e.g., marketing emails)

To make any of these requests, please contact us using the information below.

We will respond within a reasonable timeframe, and in accordance with applicable law (e.g. CCPA for California residents).

Data Security

We take reasonable steps to protect the personal information we collect from loss, misuse, unauthorised access, disclosure, or alteration. However, no method of internet transmission or electronic storage is 100% secure.

If we become aware of a data breach that may affect you, we will notify you in accordance with applicable laws.

Changes to This Privacy Policy

We may update this policy from time to time to reflect changes in our practices or legal requirements. The “Effective Date” at the top of this page will be updated accordingly.

Continued use of our website after any changes are posted indicates your agreement to the revised policy.

Contact Us

If you have any questions or concerns about this Privacy Policy or how we handle your data, please contact:

The NORSE Institute

Email: nora.norse@gmail.com
Website: www.norseinstitute.org