Privacy policy

Rules on gender equality

All terms used on the website in the masculine grammatical gender include and refer to both masculine and feminine genders.

Basis of protection of personal data

Life – the association of citizens for the fight against rare diseases in children (association) supports the protection of the privacy of visitors and users when visiting and using the website Our privacy policy respects the principles set forth in the Personal Data Protection Act (Official Gazette of the RS, No. 87/2018) and the European Union Regulation on the Protection of Personal Data (GDPR).

Regulations that protect personal data must be respected not only by us as an association, but also by all users of our website.

In accordance with the importance of protecting your personal data, please read the privacy policy carefully.

The usage and purpose of the website

Our website is intended for all citizens, and especially for patients and healthcare workers, with the aim of exchanging knowledge and experiences related to rare diseases, health, therapies, clinical studies and all other professional information regarding the improvement of treatment of rare diseases. Since we are very aware of the nature and sensitivity of the data that will be shared on our website, through the privacy policy we want to inform you about the risks and benefits of providing personal data.

In addition to the general purpose, our website creates a specific internet community within which the volume of data that is collected and the level of their processing is defined, taking into account the needs of users. Namely, your interest may be focused on the delivery of electronic newsletters, which are divided into two groups – medical (for healthcare workers) and general (for the general population). Any user can sign up for both newsletters regardless of their medical knowledge.

The exchange of experiences and knowledge is provided through communication on forums that are classified into two groups depending on the type of user. The first forum is designated for doctors only, which means that access is limited. The condition for access to the forum is the possession of a certain medical license. The second forum was created for the wider community of users, that is, it can be accessed by anyone interested. Communication on both forums must take place in compliance with the rules of use and privacy policy.

Each user may be interested in information about a specific rare disease, which will be enabled by registering in a specific form.

What information you get from the privacy policy

Through the privacy policy, the association allows you to receive information:

1. what personal data we collect,
2. for what purposes we collect personal data,
3. how we store and process personal data.

Your consent to the provision and processing of data and your right to withdraw consent

We collect personal data only if you submit it to us during registration on the website. The most important basis for the collection of your personal data is your consent, which is given in writing on a specific form.

As an association that respects the will of its users, we point out that you can revoke your consent at any time. From the moment of submitting the revocation of consent, our right to further process your personal data ends. It is very important that you know that the processing of your personal data before submitting the withdrawal of consent was completely lawful.

In particular, we inform you that certain data are collected automatically, which you are aware of by reading the privacy policy published on our website.

The right to amend personal data

Every user has the right to request the modification of personal data. In order for us to make the change, you need to submit a written request with a precisely stated change.

You can send a written request to change your personal data to the following address:

Life – citizens’ association for the fight against rare diseases in children
Address: Bulevar Oslobođenja 41, 21000 Novi Sad

You can also send a written request to change personal data to e-mail:

The right to information about your personal data that we collect and process

Every user has the right to access their personal data that we have. In order to get the desired information, you need to send us a written request to the address:

Life – citizens’ association for the fight against rare diseases in children
Address: Bulevar Oslobođenja 41, 21000 Novi Sad

You can also send a written request to change personal data to e-mail:

Personal information we collect from you

The personal data we collect from you can be divided into two groups.

The first group belongs to the data that you provide us directly in writing by filling out a specific form on the website:

  1. Name and surname,
  2. E-mail address,
  3. Nickname,
  4. Age,
  5. code,
  6. country of residence,
  7. Place of residence,
  8. Zip Code,
  9. License number (for physicians only).

You provide us with this information when registering your account on the website.

The second group of data belongs to the information that we collect automatically every time you visit our website. These data include:

  1. Technical information about your device, operating system, browser you use,
  2. IP address

The association collects and processes your data, which includes electronic correspondence between you and the association, as well as messages left on forums.

Use of "cookies"

The association through can also collect data using “cookies”. Through “cookies”, the association receives data:

  1. how many users visit,
  2. how users visit,
  3. how users use,
  4. when users visit

These “cookies” are used to improve and improve the database and the data it contains.

In this privacy policy, we would like to inform you that you can set your internet browser to control whether you accept “cookies”, reject them or receive information each time a “cookie” is sent to you.

Since the association uses Google Analytics as an analysis tool, there is a possibility that they may deliver “cookies” to you.

The association does not use other platforms to collect and process your data.

The association is not responsible for the collection and processing of your personal data if you access other websites whose locations are on our website. In that case, we advise you to read the privacy policy found on other websites you visit.

Minors and data collection

The association does not collect data from persons under the age of 18, and accordingly we strongly recommend that you do not submit false information regarding age.

Purpose of collecting personal data

The amount of personal data we collect depends on the level of your use of the website

Based on a special form that you need to fill out in order to access a certain part of the website, the scope of personal data is determined. In this regard, it is about data that is not collected automatically by accessing the internet presentation itself, but personal data that you need to enter directly into the form.

Storage and processing of personal data

By using the website and registering, you agree that we can store and process the data you have provided to us.

The personal data that you have provided to us is stored by an association whose business headquarters is located in the Republic of Serbia. The association that collects your personal data through the website as a data handler is responsible for their storage.

Your personal data will be used by the association to:

  1. the electronic newsletters you registered for have been delivered to you,
  2. you have been enabled to access the forums and participate in the communication within the forums,
  3. you have been provided with information about a specific rare disease,
  4. electronic communication (e-mail correspondence) took place between you and the association.

In order to conduct research, maintain the website, and edit the content, the association will use third parties as data processors who will have special authorizations for this.

Association rights to change privacy policy

The association has the right to change, modify and supplement the privacy policy without notifying the user.

In the event of a change in the privacy policy, the association is not responsible for the consequences resulting from the change.

After the change, the association will consider that the user is familiar with the changed content of the privacy policy after viewing/using the website.

Submission of data to authorities

The association will only have the obligation to provide/disclose your personal data that is with it based on a court decision and if there is a legal obligation.