Last Updated: 13/3/2025
1. Introduction
Welcome to Geneformation (“we,” “us,” or “our”). We provide research-based information on rare genetic conditions, aiming to help families and individuals better understand complex scientific data. This Privacy Policy explains how we collect, use, disclose, and safeguard your personal information. By using our website or services, you agree to the practices described in this policy.
2. Information We Collect
2.1 Personal Data
We may collect personal data you voluntarily provide, such as:
- Contact Information: Name, email address, phone number (optional)
- Genetic/Medical Details (Optional): Information about your or a loved one’s rare genetic diagnosis, if you choose to share these details for research-based insights.
2.2 Usage Data
We may also collect information about how you access and use our site, including IP address, browser type, device information, and pages visited. This helps us improve site performance and user experience.
3. How We Use Your Information
We use personal data to:
- Provide and personalize our research-based services
- Respond to inquiries or requests submitted via our contact form
- Communicate updates, new features, or relevant information (if you opt in)
- Monitor and analyze usage of our website, ensuring technical functionality and security
4. Legal Basis for Processing (If Applicable)
Where required by law (e.g., in the EU under GDPR), we process your data based on legitimate interests (providing our service), consent (when you opt in to certain disclosures), or compliance with legal obligations.
5. Confidentiality & Non-Clinical Disclaimer
- Confidentiality: We strive to maintain the confidentiality of any information you share. However, no transmission of data over the internet or any method of electronic storage is guaranteed to be 100% secure.
- Non-Clinical Nature: Please note that Geneformation does not provide medical advice, diagnosis, or treatment. Our services are strictly research-based and informational.
6. How We Share Your Information
We do not sell or rent your personal data to third parties. We may share information only:
- With service providers who help us operate our website or conduct business (e.g., hosting providers)
- If required by law, such as to comply with a court order or legal process
- To protect our rights, property, or safety of our users or the public
7. Data Retention
We retain personal data as long as is necessary to fulfill the purposes outlined in this policy or comply with legal obligations. You may request deletion of your information at any time (see Section 10: Your Rights).
8. Security Measures
We take reasonable measures to protect your data from unauthorized access, alteration, or disclosure. This includes using secure hosting environments and SSL (Secure Sockets Layer) for data transmission.
9. Third-Party Links
Our website may contain links to external sites. We are not responsible for the privacy practices or content of those sites. We encourage you to review their privacy policies before sharing personal information.
10. Your Rights (Where Applicable)
Depending on your jurisdiction (e.g., GDPR in the EU), you may have the right to:
- Access and obtain a copy of your personal data
- Request correction or erasure of personal data
- Object to or restrict processing
- Withdraw consent at any time (this does not affect the lawfulness of processing based on consent before its withdrawal)
11. Children’s Privacy
Our services are not directed toward children under the age of 16. We do not knowingly collect personal data from anyone under 16 without explicit parental consent. If you believe we have inadvertently collected such data, please contact us to remove it.
12. Changes to This Privacy Policy
We may update this Privacy Policy periodically to reflect changes in our practices or for other operational, legal, or regulatory reasons. Any updates will be posted on this page with a new “Last Updated” date.
13. Contact Us
If you have questions about this Privacy Policy or wish to exercise any of your rights regarding your personal data, please contact us at:
Email: lior@raregeneticconditions.com
By using our website and services, you acknowledge that you have read and understand this Privacy Policy.