politique de confidentialité

Effective Date: 27/05/2025
Last Updated: 27/05/2025

1. WHO WE ARE
This website is operated by Association LMBRD2 - France, a French non-profit organization (Association loi 1901) dedicated to raising awareness and supporting research on LMBRD2, a rare genetic disorder.

Data Controller:
LMBRD2 France
Registered Office: 24 Avenue de lattre de Tassigny, 59320 Haubourdin, France
Email: contact@lmbrd.org

2. DATA WE COLLECT AND WHY
2.1 Comments
When you leave a comment, we collect the information you provide in the comment form, your IP address, and browser user agent string to help spam detection. An anonymized string created from your email address may be sent to Gravatar to verify if you have a profile picture there. Once your comment is approved, your profile picture will be publicly visible alongside your comment.

Legal basis: Your consent and our legitimate interest in managing community engagement and preventing spam.

2.2 Contact Forms
When you submit a contact form, we collect the information you voluntarily provide to respond to your inquiry.

Legal basis: Your consent and performance of your request.

2.3 Media
If you upload images to the website, avoid including location data (EXIF GPS) in the images, as other visitors can extract this information from images you upload.

2.4 Cookies
We use cookies to remember your details (name, email, website) when you leave a comment, making it easier to complete future comment forms. Comment cookies last for one year. If you log in to our site, login cookies last for two days, and screen display option cookies last for one year.

We may also use analytics cookies to understand how visitors use our website. These cookies require your prior consent via our cookie banner.
Legal basis: Your consent for analytics cookies; legitimate interest for strictly necessary cookies.

2.5 Embedded Content
Articles on this site may include embedded content such as videos, images, or articles from other websites. Embedded content from other websites behaves as if you visited that other website directly. These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with embedded content, especially if you have an account and are logged in to that website.

3. HOW LONG WE RETAIN YOUR DATA
Comments and their metadata are retained for three years from publication or until you request deletion. This allows us to recognize and approve follow-up comments automatically. User profiles registered on our site are retained until the user requests deletion or after three years of inactivity. Technical logs and IP addresses are retained for three years for security purposes.

4. YOUR RIGHTS
Under the General Data Protection Regulation (GDPR), you have the right to access, rectify, erase, restrict processing, object to processing, and request portability of your personal data. You may also withdraw your consent at any time where processing is based on consent.
 

To exercise your rights, contact us at:

Email: contact@lmbrd.org
Postal Address: 24 Avenue de lattre de Tassigny, 59320 Haubourdin, France
Contact Form: CLICK HERE

We will respond to your request within one month. For security purposes, we may request proof of identity before processing your request.

Right to lodge a complaint:
If you believe your data protection rights have been violated, you may lodge a complaint with the French Data Protection Authority (CNIL) at www.cnil.fr or with your local supervisory authority.

5. WHO WE SHARE YOUR DATA WITH
We only share your personal data with service providers necessary to operate our website, including our web hosting provider, anti-spam services, and analytics providers if applicable. These providers are contractually obligated to protect your data and process it only according to our instructions.

If data is transferred outside the European Economic Area, we ensure appropriate safeguards are in place through Standard Contractual Clauses or other legally recognized mechanisms.
We may disclose your data if required by law or to protect our legal rights, prevent fraud, or ensure security. We never sell, rent, or trade your personal data for commercial purposes.

6. HOW WE PROTECT YOUR DATA
We implement appropriate technical and organizational security measures to protect your personal data from unauthorized access, loss, or misuse, including SSL/TLS encryption, secure password policies, access controls, regular security updates, and secure backups.

7. DATA BREACHES
In the event of a personal data breach that poses a risk to your rights and freedoms, we will notify you and the French Data Protection Authority (CNIL) within 72 hours and take appropriate measures to mitigate the impact.

8. HEALTH-RELATED INFORMATION
Given our organization's focus on LMBRD2, a rare genetic disorder, discussions may involve health-related topics. However, we do not intentionally collect health data through our website. If you voluntarily choose to share health information in comments or messages, you do so at your own discretion. We recommend using pseudonyms to protect your identity. Such information is subject to enhanced protection under GDPR and requires your explicit consent. You may withdraw this consent at any time.

9. CHILDREN'S PRIVACY
Our website is not intended for children under 16 years of age. If you are under 16, please obtain parental consent before providing any personal information or posting comments.

10. CHANGES TO THIS PRIVACY POLICY
We may update this Privacy Policy to reflect changes in our practices or legal requirements. Material changes will be announced prominently on our website, and the "Last Updated" date will be revised. We encourage you to review this policy periodically.

11. NOUS CONTACTER
For any questions about this Privacy Policy or your personal data:
Email: contact@lmbrd.org
Postal Address: 24 Avenue de lattre de Tassigny, 59320 Haubourdin, France
Contact Form: CLICK HERE

12. SUPERVISORY AUTHORITY
Commission Nationale de l'Informatique et des Libertés (CNIL)
3 Place de Fontenoy, TSA 80715
75334 Paris Cedex 07, France
Website: www.cnil.fr
Phone: +33 1 53 73 22 22

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By using our website, you acknowledge that you have read and understood this Privacy Policy.