Privacy Policy

1. What We Collect

When you use SickleCellPedia / Drepanopedia, we may receive:

• Your messages and questions, including health-related information you choose to share.
• Technical data such as your messaging ID/phone number on the Platform, IP address, device type, language, and time of interaction.
• Usage logs (e.g., how often and when you use the Chatbot, errors).

We encourage you not to share more personal details than necessary.

2. How We Use Your Information

We use your information to:

• Run and improve SickleCellPedia / Drepanopedia.
• Understand what users ask and what information is most helpful.
• Train, test, and refine our AI tools.
• Conduct research and produce de-identified or aggregated insights about sickle cell information needs and Chatbot use.
• Publish these insights in reports, articles, or presentations, without identifying you.
• In the future, license or sell de-identified and aggregated data, models, or insights.

We do not sell personally identifying information, such as your name, phone number, or direct contact details.

3. Who We Share With

We may share information with:

• Service providers (e.g., hosting, AI model providers, analytics) who process data on our behalf under contracts that require them to protect it.
• Research partners, in de-identified or aggregated form.
• Other organizations, if we license or sell de-identified or aggregated datasets or models.
• Authorities, if required by law or to protect people's safety or our rights.

4. Where Your Data Is Processed

• SCKIN is based in the United States.
• Your information may be processed in the US and other countries where our providers operate.
• We use legal and technical measures to protect your data, but no system is 100% secure.

5. How Long We Keep Data

• We keep personal data as long as needed to run SickleCellPedia / Drepanopedia, improve it, and meet legal obligations.
• We may keep de-identified or aggregated data for research and analytics for a long time or indefinitely.

6. Your Rights

Depending on where you live, you may have rights to:

• Access, correct, or delete your personal data;
• Object to or restrict some types of processing;
• Withdraw consent where we rely on consent;
• Complain to a data-protection authority.

Because we see only limited identifiers (e.g., your messaging handle/phone number on the Platform), we may need you to contact us and provide enough detail to find your data.

You can reach us at: contact@sckin.org

7. Children

SickleCellPedia / Drepanopedia is not directed at children under 13. If we learn we collected personal data from a child unlawfully, we will take reasonable steps to delete it.

8. Third-Party Platforms

• WhatsApp, Facebook Messenger, and other Platforms have their own privacy policies and data practices.
• We do not control their handling of your data.
• Please review their policies directly.

9. Changes

We may update this Privacy Notice from time to time. We will update the "Last updated" date. Continued use of SickleCellPedia / Drepanopedia means you accept the updated Notice.

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Résumé en français – Vie privée (Drepanopedia)

Comment Drepanopedia utilise vos données – version courte

• Nous voyons les questions que vous envoyez et quelques infos techniques (par ex. type d'appareil, heure d'utilisation).
• Nous utilisons ces données pour faire fonctionner le chatbot, corriger les problèmes et améliorer Drepanopedia.
• Nous utilisons vos questions, sous forme agrégée et/ou dé-identifiée, pour la recherche et des publications sur les besoins d'information en drépanocytose et les outils numériques.
• À l'avenir, nous pourrons concéder sous licence ou vendre des données ou modèles agrégés et dé-identifiés.
• Nous ne vendons pas d'informations qui vous identifient directement (nom, numéro de téléphone, etc.).
• Drepanopedia fonctionne via des applications tierces (WhatsApp, Facebook Messenger, etc.) qui ont leurs propres politiques de confidentialité que nous ne contrôlons pas.

Pour toute question ou demande concernant vos données, contactez-nous à contact@sckin.org.