Last Updated: January 14th 2024 by Laverriere Sebastien
Welcome to our platform dedicated to mapping and raising awareness for children affected by Syngap1 Syndrome. This Privacy Notice is designed to inform you about the collection, use, and disclosure of personal information when you use our website.
1. Information We Collect:
Personal Information: We collect personal information such as firstnames, ages, locations (not precise location but approximated based on the country provided), and contact information of children affected by Syngap1 Syndrome. This information is voluntarily provided by users who wish to contribute to our mapping initiative.
Contact Information: If you choose to contact us or put a pin on the map, we may collect your email address or other contact details to respond to your inquiries.
2. How We Use the Information:
Mapping: The primary purpose of collecting information is to create a map that visually represents the global impact of Syngap1 Syndrome. This map is intended to raise awareness and facilitate connections within the Syngap1 community.
Communication: We may use your contact information to respond to your inquiries, provide updates about our mapping initiative, and seek your consent for any additional uses of your information.
3. Sharing Information:
Public Map: The information collected, excluding contact details, will be displayed on the public map. The level of sharing is defined by parents and cargivers. This map is accessible to anyone visiting our website.
Anonymized Data: Aggregated and anonymized data may be shared for research purposes, collaborations, or with relevant organizations to further the understanding of Syngap1 Syndrome.
Legal Obligations: We may disclose personal information if required by law or in response to a legal process.
4. Security:
We take reasonable steps to protect the information we collect from unauthorized access, disclosure, alteration, and destruction. However, no method of transmission over the internet or electronic storage is entirely secure, and we cannot guarantee absolute security.
5. Your Choices:
You may choose not to provide personal information, but this may limit your ability to fully engage with our mapping initiative.
You can request the removal of your information from the map or contact us to update or correct any inaccuracies.
6. Children's Privacy:
Our mapping initiative is focused on children affected by Syngap1 Syndrome. Parents or guardians are encouraged to review and contribute information on behalf of their children.
7. Changes to this Privacy Notice:
We may update this Privacy Notice from time to time. The latest version will be posted on our website with the date of the last update.
8. Contact Us:
If you have any questions, concerns, or requests regarding your personal information or this Privacy Notice, please contact us at info@syngapglobal.net .
Thank you for being a part of our Syngap1 Global community. Together, we can make a difference.
