Privacy Policy

Effective Date: September 07, 2025

1. Introduction

SFRD (referred to as "we," "us," or "our") is dedicated to supporting patients living with rare diseases. We understand the sensitive nature of personal and health information and are committed to protecting your privacy. This Privacy Policy describes how we collect, use, store, share, and protect your information when you use our website and services (collectively, the "Portal").

By accessing or using our Portal, you agree to the terms of this Privacy Policy. If you do not agree with our policies and practices, please do not use our Portal.

2. Information We Collect About You

We collect various types of information, including personal data, to provide and improve our services. This information may include:

A. Information You Provide Directly to Us:

  • Contact Information: Name, email address, postal address, phone number.
  • Account Information: Username, password, security questions.
  • Demographic Information: Date of birth, gender, country of residence.
  • Health Information (Sensitive Data): Information related to your rare disease diagnosis, symptoms, treatments, medical history, genetic information, family history, and other health-related details you choose to share. This is generally collected with your explicit consent.
  • User-Generated Content: Posts, comments, messages, stories, or other content you submit to forums, communities, or other interactive features of the Portal.
  • Correspondence: Information you provide when you contact us with inquiries, feedback, or support requests.
  • Donation Information: Payment information (though processed by secure third-party processors, we may receive confirmation details).

B. Information We Collect Automatically:

  • Usage Data: Details of your visits to our Portal, including traffic data, location data, logs, and other communication data, and the resources that you access and use on the Portal.
  • Technical Data: Your IP address, browser type and version, operating system and platform, time zone setting, browser plug-in types and versions, device type, and other technology on the devices you use to access this Portal.
  • Cookies and Tracking Technologies: Information collected through cookies, web beacons, and similar technologies (please see our separate Cookie Policy for more details).

3. How We Use Your Information

We use the information we collect for the following purposes:

  • To Provide and Manage Our Services: To create and manage your account, deliver requested services, provide access to resources, and facilitate participation in community features.
  • To Personalize Your Experience: To tailor content, resources, and support services based on your rare disease, interests, and past interactions.
  • To Communicate With You: To respond to your inquiries, send administrative notices, provide updates about our services, and deliver newsletters or other communications you have opted in to receive.
  • For Research and Development: To understand the needs of the rare disease community, improve existing services, and develop new ones. We may use anonymized or aggregated data for statistical analysis, research, and advocacy efforts.
  • For Security and Fraud Prevention: To protect the security and integrity of our Portal, prevent fraud, enforce our Terms of Service, and comply with legal obligations.
  • To Improve Our Portal: To analyze usage patterns, diagnose technical problems, and optimize the performance and functionality of our website.
  • For Legal and Regulatory Compliance: To comply with applicable laws, regulations, legal processes, or governmental requests.
  • With Your Consent: For any other purpose disclosed to you at the time of collection or for which we obtain your consent.

4. How We Share Your Information

We are committed to keeping your personal and health information confidential. We do not sell your personal data. We may share your information only in limited circumstances:

  • With Your Explicit Consent: We will only share your sensitive health information with third parties (e.g., researchers, medical professionals, other organizations) if we have obtained your explicit consent to do so.
  • Service Providers: We may share information with trusted third-party service providers who perform functions on our behalf, such as website hosting, data analysis, payment processing, email delivery, and customer support. These service providers are contractually obligated to protect your information and use it only for the purposes for which we disclose it to them.
  • Anonymized or Aggregated Data: We may share anonymized or aggregated data that cannot be reasonably used to identify you. This data may be used for research, public health initiatives, reporting, or business analysis.
  • Legal Requirements: We may disclose your information if required to do so by law or in the good faith belief that such action is necessary to:
    • Comply with a legal obligation.
    • Protect and defend the rights or property of SFRD.
    • Prevent or investigate possible wrongdoing in connection with the Portal.
    • Protect the personal safety of users of the Portal or the public.
    • Protect against legal liability.
  • Business Transfers: In the event of a merger, acquisition, or asset sale, your personal data may be transferred. We will provide notice before your personal data is transferred and becomes subject to a different Privacy Policy.

5. Data Security

We have implemented appropriate technical and organizational measures designed to secure your personal information from accidental loss and from unauthorized access, use, alteration, and disclosure. These measures include:

  • Encryption of data in transit and at rest where appropriate.
  • Access controls and authentication procedures.
  • Regular security audits and vulnerability assessments.
  • Employee training on data protection and privacy.

However, the transmission of information via the internet is not completely secure. Although we do our best to protect your personal information, we cannot guarantee the security of your personal information transmitted to our Portal. Any transmission of personal information is at your own risk.

6. Data Retention

We retain your personal information for as long as necessary to fulfill the purposes for which it was collected, including for the purposes of satisfying any legal, accounting, or reporting requirements. To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorized use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.