KVKK AND LIGHTING TEXT

INFORMATION REGARDING THE PROCESSING OF PERSONAL DATA AND PRIVACY POLICY

Rare Diseases Network ("NHA" or "Our Association") within the scope of the Personal Data Protection Law ("KVKK") numbered 6698 in order to protect the fundamental rights and freedoms of individuals, especially the privacy of private life, and to determine the liabilities of natural and legal persons who process personal data. We would like to inform you in accordance with Article 10 of the KVKK titled "Obligation of Disclosure of Data Officer" regarding your personal data, which we will obtain with the videos you will send as a result of the rare patient video call made by you or your child that you have committed to be the legal representative.

NH, No. 6698 KVKK legal basis of personal data primarily from the area kvkk' other legislation, including secondary legislation in force in the Republic of Turkey ( "Data Protection Legislation") operates as appropriate.

If you send a video within the scope of the video call project, your personal data belonging to you / your child as a guardian are processed within the following scope:

Personal Data to be Processed:

As a result of your participation in the rare patient video call made by NHA, the following personal data belonging to you or your child whose guardian you are will be processed:

Your Identity Data: Name and surname, age
Your Contact Data: Telephone, e-mail, notification address,
Your health and treatment data: Your personal data of special quality regarding your health and treatment process that you will specify in the video content,
Visual and Audio Data: Your image, voice recording and statements within the scope of the videos you will send as a result of the Rare Patient Video Call performed for the purposes of NHA,

Non-personal information is information that you cannot personally identify. This information can be used for any purpose and can be shared with third parties without approval.

Purpose of Processing Personal Data

Personal data obtained as a result of the video call made by NHA and belonging to you or your child to whom you are a guardian; Planning and execution of the activities of our Association, providing information to authorized institutions and organizations from the legislation, raising awareness in the field of rare diseases in line with the fields of activity of our Association, informing and raising the public in the field of rare diseases, planning and executing the necessary audit activities to ensure that the activities are carried out in accordance with the procedures of our Association and the relevant legislation. , planning and execution of corporate sustainability activities, carrying out activities for the protection of the reputation of our Association, management of request and complaint processes, planning and execution of corporate governance and communication activities, in connection with the law and integrity rules and the purpose for which they are processed, limited and measured, foreseen in the relevant legislation, will be processed in accordance with the principles of preservation for the required period.

Personal data can be obtained in whole or in part, by automatic or non-automatic means, saving, storing, preserving, changing, rearranging, etc. can be processed through transactions. The collected information is not shared with third parties, used for commercial purposes or sold for any reason other than activity, without your knowledge or otherwise.

In this context, the videos you transmit to us will be processed for publication on the website and social media accounts of NHA and to be published through press organizations at the press conference to be held within the framework of the rare diseases day and made available to the public and will be reproduced by other users on the social media and website platforms of NHA. It will remain live, with the option to share.

Transfer of Personal Data

In order for the purposes mentioned above to be fulfilled by you, in accordance with the law and the rules of honesty and the principles of keeping the personal data related to the purpose for which they are processed, limited and measured, stipulated in the relevant legislation or required for the purpose for which they are processed, within the framework of legislation or cooperating domestic / international / international, public / private institutions and organizations, consultants or solution partners of our Association, other institutions, authorized institutions and organizations, suppliers or subcontractors of our Association, including institutions that will take part in the assembly and editing processes of videos, rare to the press organizations where the videos transmitted within the scope of the patient video call will be broadcast, the persons or organizations permitted by the provisions of other relevant legislation, legally authorized public and / or private law legal entities limited to the purpose they request within their legal authority and other legislative provisions with the persons or organizations authorized or required by it can be shared with official authorities upon the demands of the business authorities. Your personal data can be transferred to third parties without your explicit consent in accordance with the principles set out in Articles 5 and 8 of the Personal Data Protection Law.

Transfer activities abroad will take place if you have your express consent. To withdraw your express consent, you can send us your requests via the address specified below.

Collection Method of Personal Data and Legal Reason

As a result of your participation in the rare patient video call, your personal data can be collected in written, verbal or electronic environment. By participating in the video call published by the NHA, your personal data are collected in line with the legal reason that "the person concerned has been made public by himself", which is regulated in Article 5 of KVKK. In this context, the legal basis for the collection and processing of your personal data is that you participate in the call for rare patient videos and share this information with your own will. You can always withdraw your express consent by sending your request in writing to the address specified below.

Deletion, Destruction or Anonymization of Personal Data

Pursuant to Article 7 of the KVKK, although the personal data has been processed in accordance with the relevant legislation, if the reasons for processing are eliminated, the personal data will be deleted, destroyed or anonymized by our Association, either ex officio or upon the request of the personal data owner. The procedures and principles regarding this matter will be fulfilled in accordance with the Regulation on the Deletion, Destruction or Anonymization of Personal Data published in the Official Gazette dated 28.10.2017 and numbered 30224. When you apply to our association and request the deletion or destruction of your personal data belonging to you or your child as a guardian;

a) If all the conditions for processing personal data have disappeared; Your personal data subject to the request will be deleted, destroyed or anonymized. Your request will be concluded within 30 days at the latest and you will be informed.
b) If all the conditions for processing personal data have disappeared and the personal data subject to the request is transferred to third parties, this situation is notified to third parties; It is ensured that necessary actions are taken within the scope of the regulation.
c) If all of the personal data processing conditions are not eliminated, your request may be rejected by explaining the reason in accordance with the third paragraph of Article 13 of the KVKK and the rejection response will be notified to you in writing or electronically within 30 days at the latest.

Your Rights Arising from the Law on Protection of Personal Data

As a personal data owner according to Article 11 of the Law;

Learning whether your personal data is processed,
If personal data has been processed, to request information regarding this,
Learning the purpose of processing personal data and whether they are used for their intended purpose,
To know the third parties to whom personal data is transferred domestically or abroad,
To request correction of personal data in case of incomplete or incorrect processing,
To request the deletion, anonymization or destruction of personal data,
Request notification of third parties in case of correction, deletion, anonymization or destruction,
Object to the occurrence of a result against the person himself by analyzing the processed data exclusively through automated systems,
You have the right to demand the compensation of the damage in case of damage due to the unlawful processing of your personal data.

IF YOU WANT TO CONTACT US FOR YOUR REQUESTS

If you want to contact us, give feedback or direct your questions within the scope of KVKK, you can send an e-mail to Rare Diseases Network info@nadirhastaliklaragi.org.tr or rarehastaliklaragi@gmail.com with your request containing documents encouraging your identity and your request.
In this context, written applications to be made on the subject will be accepted after the identity verification to be made by us, and those concerned will be returned within the legal periods.
Rare Diseases Network

I have read and understood the Clarification Text on the Processing of Personal Data and the Privacy Policy submitted to me regarding the processing of personal data belonging to me and my child.

OF SPECIAL QUALITY PERSONAL DATA

PROCESSING CONSENT TEXT

I consent to the processing of my personal data of special nature, which includes the health and treatment processes of my party or my child, which is specified in the Clarification Text Regarding the Processing of Personal Data, limited to the purposes specified in the Clarification text on Processing Personal Data. I know how to withdraw this explicit consent.

OF SPECIAL QUALITY PERSONAL DATA

TRANSFER OF CONFIRMATION

A special n that includes the health and treatment processes of my party or the child I am a guardian specified in the Clarification Text on Processing Personal Data.

I hereby consent to the transfer of my personal data to third parties and press institutions from which services are obtained in the country, limited to the purposes specified in the Text of the Information on Processing Personal Data. I know how to withdraw this explicit consent.

CONSENT FOR DATA TRANSFER ABROAD
The data of the Rare Diseases Network and / or its suppliers and the platforms where the videos will be broadcast for the purpose of publishing the personal data and private personal data of me or my child, which is specified in the Information Text on Processing Personal Data, and the videos collected upon the rare patient video call of the Rare Diseases Network. I agree to be transferred abroad to be shared with storage systems. I know how to withdraw this explicit consent.

VISUAL AND AUDIO DATA CONSENT

 The publication of visual and audio data and declarations of my child or my child by the Rare Diseases Network on the website and social media of the Rare Diseases Network, and sharing them with the press institutions and organizations to be published within the framework of the press conference to be organized by the Rare Diseases Network. I consent to its publication and making it available to the public. I know how to withdraw this explicit consent.