Unidos pela Vida - Instituto Brasileiro de Atenção à Fibrose Cística, CNPJ 14.850.355/0001/84, a non-profit civil association headquartered in Curitiba, Paraná, Brazil, is committed to safeguarding your privacy and protecting your data.

The intent of this Privacy Policy ("Policy") is to inform how your information and personal data will be collected, used, shared, and stored on this platform.

This Policy applies when using our services, including online and offline data collection and personal data that are collected through our services and channels, such as websites and social media. In some cases, the user can select which type of data is allowed to be stored and/or shared.

This Policy acceptance would start by registering in the Equipe de Fibra app, and by participating in the Around the World for Cystic Fibrosis challenge. Acceptance will take place when you agree to the use of your data for each of the purposes described herein. This will indicate that you are aware of and in full agreement with how your information and your data will be used. You can choose not to provide us with the personal data necessary to use the content, in which case the content will not be provided to you.


For a better experience while using our service, Users may be asked to provide personal identification information, including, but not limited to, name, address, telephone number, asset information, personal characteristics, date of birth, geographic location, location data. This information will be stored and used as described in this Policy.


Users can update their profile information whenever there is a change to it or whenever they need to update them.

The data can only be viewed, edited, and accessed by the Instituto Unidos pela Vida administrative team. The administrative team of Unidos pela Vida can visualize the total amount of data registered on the platform and might use the information for the following general purposes:

  • - registration and usage metrics: the data will be aggregated and statistically analyzed to evaluate the scope of the content, in addition to being applied in the improvement of the functionalities offered by the platform and the materials provided through it, as well as in identifying programming errors that may affect its use.
  • - e-mail marketing: when explicitly authorized by the user, Instituto Unidos pela Vida may send emails about offers, content and services offered through the platform or by partners.

Only aggregated data with be shared publicly. No personal data from any user will be shared or used for non-statistical purposes nor to share content and materials unrelated to the platform and its apps.


The application uses third-party services that may collect information to identify User.

Outsourced service providers used by the app:

In case of an error in the application, data and information is collected (through third-party products) on your mobile, called Log Data. This registration data may include information such as the device’s Internet Protocol address ("IP"), device name, operating system version, application configuration when using our service, time and date of use of the service, and other statistics.

The partner companies mentioned in this Privacy Policy are not authorized to use your personal information in a manner other than the foregoing, except in the case of your explicit consent.

User's personal information may also be shared with law enforcement, judicial, administrative authorities or the Brazilian Public Prosecutor's Office, in case of a court order requiring the Instituto Unidos pela Vida to make Personal Information available to those authorities.

Personal information will never be shared or sold to other organizations, companies, industries for commercial purposes and/or any other purpose.


The information collected through the Equipe de Fibra app (name, email, age, city, state, country, “father of person with CF; mother of person with CF, person with CF, others, relative of someone with CF”), are stored permanently, considering that the application will remain active after the end of the “Around the World for CF Challenge” (November 22, 2021).

Platform users can request to permanently delete their data from the project database at any time, by contacting Instituto Unidos pela Vida via e-mail

5. Cookies

Cookies are files with a small amount of data that are commonly used as anonymous unique identifiers. They are sent to your browser from the websites you visit and are stored in the internal memory of your device.

This Service does not explicitly use these cookies. However, the application may use third-party code and libraries that use "cookies" to collect information and improve its service delivery. Users will know when a cookie is being sent to their device, and have the option to accept or refuse these cookies. If the option is made to refuse our cookies, users may not be able to use some parts of this Service.


Third-party companies and individuals may be employed for the following reasons:

  • To facilitate our Service;
  • To provide the Service on our behalf;
  • To perform services related to delivering the Service; or
  • To help us analyze how our Service is used.

These third parties have access to the Users' personal information in order to perform the tasks assigned to them on our behalf. However, they are required to not disclose or use the information for any other purpose.


Users can choose what personal information they want to share, however, withholding certain information may prevent users from using the platform.

The following tools are available for users to control the automatic collection and storage of their personal information:

  • email marketing: all marketing emails sent by Unidos pela Vida have the unsubscribe option available in the footer of the email. If desired, users may at any time, unsubscribe.

The account’s user may also review, improve, and amend the Personal Information provided through the profile pages or, if desired, terminate their account upon request sent to email directed to Verônica Stasiak Bednarczuk de Oliveira.


Unidos pela Vida updates the platform continously in order to improve its functionality. Therefore, this Policy may be amended, at any time, for the purpose of mirroring the adjustments made to the project. However, whenever any change occurs in this Policy, users will be informed in advance. If a user does not agree to the new provisions in the Policy, they can reject them. However, this means that said user will no longer be able to access the Platform and make use of its functionalities. If the User continues to make use of the Platform, even after the Policy change, this means that this user is in full agreement with all modifications.


The Equipe de Fibra App uses private key encryption, through digital certificates, for access to the platform. The users' passwords are encrypted in the database.

All personal information are protected using security practices, which include physical and digital protection measures that prevents unauthorized third parties from having unauthorized access to personal information.

Users are responsible for keeping their access devices safe from unauthorized access, by deploying the appropriate tools available, such as antivirus and firewall, among others, as well as use up-to-date and efficient software for access to services. In no event will Instituto Unidos pela Vida request personal information via email, in particular passwords. Instituto Unidos pela Vida is not responsible for any fraudulent electronic communications that collect personal data from its users (phishing). There is no method of transmission over the Internet, or of electronic storage that is 100% secure and reliable, and, thus, total security cannot be guaranteed.

10. Links to other sites

This service may contain links to other websites. By clicking on a third-party link, users will be redirected to that website. Please note that we do not operate these external websites. Therefore, we strongly recommend that you review the Privacy Policy from these websites. We have no control or responsibility for the content, privacy policies or practices of any third-party websites or services.

11. Children's privacy

This app is not intended to be used by anyone under the age of 18 years old. We do not knowingly collect personally identifiable information from children under the age of 18. If we found out a child under the age of 18 has provided us with personal information, it will be immediately deleted from our servers. If you are a parent or guardian and know that your child has provided us with personal information, please contact us through, so the necessary measures can be taken. Minors will only be able to participate in the Around the World for CF Challenge accompanied by an adult officially registered.


This Privacy Policy is governed by the laws of the Federative Republic of Brazil. If Users have any questions about this Policy or want to make any request regarding the personal information or preferences saved by the website or the application, they must contact us on

In case of any dispute regarding this Policy, the court of the city of Curitiba, State of Paraná, is appointed to settle any issues stemming from this Policy, with the waiver from any other option regardless of how privileged it may be.

This policy comes in force on 13/August/2021.