Privacy Policy

Data controller: Together Holding Ádin's Hand Foundation

Registration number: 09-01-0002308

Registry court: Debrecen Court

Headquarters: 4034 Debrecen, Hétvezér utca 47.

Tax number: 19352109-1-09

Telephone contact: 0630-507-1668

Email: egyuttadinkezetfogva@gmail.com

Website: https://adin.temarketinged.hu/

General Information

Purpose of data management information:

The purpose of this data management information is for the Data Controller to provide information on the data protection and data management principles and rules for the management of the personal data of the persons who come into contact with it.

When developing the provisions of this data management information, the Data Controller took particular note of Regulation 2016/679 of the European Parliament and the Council on the protection of natural persons with regard to the processing of personal data and on the free flow of such data, as well as on the repeal of Regulation 95/46/EC (general data protection regulation, hereinafter: GDPR), CXII of 2011 on the right to information self-determination and freedom of information. Act (hereinafter: Infotv.) and the provisions of other relevant legislation.

  1. Concepts related to data management

The definitions occurring during personal data management were determined by the GDPR. For the sake of transparency and clarity, the data controller records the most important concepts in this point, taken from the GDPR.  

  1. "personal data": any information relating to an identified or identifiable natural person ("data subject"); a natural person can be identified directly or indirectly, in particular on the basis of an identifier such as a name, number, location data, online identifier or one or more factors relating to the physical, physiological, genetic, mental, economic, cultural or social identity of the natural person identifiable;
  2. "special data": Personal data referring to racial or ethnic origin, political opinion, religious or worldview beliefs or trade union membership, as well as genetic and biometric data aimed at the unique identification of natural persons, health data and personal data relating to the sex life or sexual orientation of natural persons. The processing of this data is generally prohibited. 
  3. "data handling": any operation or set of operations performed on personal data or data files in an automated or non-automated manner, such as collection, recording, systematization, segmentation, storage, transformation or change, query, insight, use, communication, transmission, distribution or otherwise making it available , alignment or linking, restriction, deletion or destruction;
  4. "restriction of data management": marking stored personal data for the purpose of restricting their future processing;
  5.  "data controller": the natural or legal person, public authority, agency or any other body that determines the purposes and means of processing personal data independently or together with others; if the purposes and means of data management are determined by EU or member state law, the data controller or the special aspects regarding the designation of the data controller may also be determined by EU or member state law;
  6. "data processor": the natural or legal person, public authority, agency or any other body that processes personal data on behalf of the data controller;
  7.  "addressee": the natural or legal person, public authority, agency or any other body with whom the personal data is communicated, regardless of whether it is a third party. Public authorities that have access to personal data in accordance with EU or Member State law in the context of an individual investigation are not considered recipients; the management of said data by these public authorities must comply with the applicable data protection rules in accordance with the purposes of data management;
  8. "third party": the natural or legal person, public authority, agency or any other body that is not the same as the data subject, the data manager, the data processor or the persons who have been authorized to handle personal data under the direct control of the data manager or data processor;
  9. "consent of the data subject": the voluntary, specific, and clear declaration of the will of the data subject based on adequate information, by which the data subject indicates through a statement or an act clearly expressing the confirmation that he gives his consent to the processing of personal data concerning him; 
  10.  "data protection incident": a breach of security that results in the accidental or unlawful destruction, loss, alteration, unauthorized disclosure of, or unauthorized access to, personal data transmitted, stored or otherwise handled;
  11. "supervisory authority": an independent public authority established by a Member State in accordance with Article 51 of the GDPR;
  1. principles of data management
  • Personal data must be handled legally and fairly, as well as in a transparent manner for the data subject.
  • Personal data can only be processed for a specific purpose and legal basis, in order to exercise a right and fulfill an obligation.
  • In all stages of data management, the purpose of data management must be met, the collection and management of data must be fair and legal. Only personal data that is essential for the realization of the purpose of data management and suitable for achieving the purpose can be processed.
  • Personal data can only be processed to the extent and for the time necessary to achieve the purpose.
  • The data management of the Data Controller is accurate and up-to-date. The Data Controller shall take all reasonable measures to ensure that inaccurate personal data for the purposes of data management are immediately deleted or corrected.
  • The Data Controller stores personal data in a form that allows the identification of the data subjects only for the time necessary to achieve the goals of personal data management, subject to the storage obligation defined in the relevant legislation.
  • The processing of personal data must be carried out in such a way that the appropriate security of personal data is ensured by the application of appropriate technical or organizational measures, including protection against unauthorized or illegal processing, accidental loss, destruction or damage of data.

The Data Controller is responsible for compliance with the principles described above and must be able to demonstrate compliance.

  1. Purpose, legal basis and method of data management

3.1. DATA MANAGEMENT RELATED TO CONTACTING AND MAINTAINING CONTACT

3.1.1. Contact via email and online contact form

Purpose of data management:

Contacting or maintaining contact with the data subject based on the data subject's inquiry. The data manager uses the data provided by the data subject subject to purpose, exclusively in connection with the data subject's inquiry. The release of personal data to a third party is only possible with the prior, express consent of the person concerned, unless the law has a binding force to the contrary.

Legal basis for data management:

According to Article 6 (1) point a) GDPR, the data subject's voluntary consent

Data processing takes place on the basis of the data subject's voluntary consent based on appropriate information, which the data subject gives by sending the request and the data contained therein to the Data Controller in the scope necessary to respond to the request and to deal with its contents (e.g. providing information). 

Consent is given by the person concerned by voluntarily providing the data in question and, in the case of a form, by filling it in/checking a checkbox.

Scope of processed personal data:

  • name (surname and first name)
  • e-mail address
  • optional phone number

The data manager does not check the personal data provided to him. The person providing the data is solely responsible for the veracity of the data provided. 

Duration of data management

The processing of the provided personal data in the context of contact or contact activities lasts until:

  • until the data subject withdraws their consent,
  • but no more than one year from the date of entering the data.

3.1.2 Contact via telephone

Purpose of data management:

The data subject can also contact the Data Controller by telephone. In this case, the data controller learns the last and first name and the phone number of the calling party. The purpose of data management is to contact or maintain contact with the data subject based on the data subject's request.

Through telephone contact, the data controller verbally informs the data subject of the availability of this information, and draws the caller's attention to the fact that his personal data can only be processed if the calling party confirms in writing that he has read and accepted the contents of this information.

Legal basis for data management:

According to Article 6 (1) point a) GDPR, the data subject's voluntary consent

Data processing takes place on the basis of the data subject's voluntary consent based on appropriate information, which the data subject gives by sending the request and the data contained therein to the Data Controller in the scope necessary to respond to the request and process its contents.

Consent is given by the data subject voluntarily providing the data in question.

Scope of processed personal data:

  • name
  • telephone number

The data manager does not check the personal data provided to him. The person providing the data is solely responsible for the veracity of the data provided. 

Duration of data management

The processing of the provided personal data in the context of contact or contact activities lasts until:

  • until the data subject withdraws their consent,
  • but no more than one year from the date of entering the data.

3.1.3. Contact via social media platform

Purpose of data management: 

For the purpose of providing online contact options for the data controller, publishing entries, and promoting the foundation and its activities, the Facebook page (https://www.facebook.com/p/Egy%C3%BCtt-%C3%81din-Kez%C3%A9t-Fogva-Alap%C3%ADtv%C3%A1ny-100090008194671/), Instagram page (https://www.instagram.com/egyutt_adinert/) and TikTok page (https://www.tiktok.com/find/egy%C3%BCtt-%C3%A1din-kez%C3%A9t-fogva-alap%C3%ADtv%C3%A1ny) operates.

When commenting on posts related to the foundation, the data controller learns the last and first name of the commenters and their comments, which they access based on their consent. 

It is also possible to send messages on Facebook, Instagram and TikTok. During the sending of messages, the data manager learns the sender's last and first name, which is obtained based on the sender's consent. In the case of contact in the form of Facebook, Instagram and TikTok messages, the data controller informs the data subject in writing about the availability of this information, and draws the sender's attention to the fact that his personal data can only be processed if the sender confirms in writing that he has read the contents of this information, and accepted. 

Legal basis for data management:

According to Article 6 (1) point a) GDPR, the data subject's voluntary consent

Data management takes place on the social media site, so the duration and method of data management, as well as the options for deleting and modifying data, are governed by the regulations of the given social media site.

The data protection policy for Facebook and Instagram (as Meta products) is available at the following link: https://www.facebook.com/privacy/explanation

The relevant privacy policy for TikTok is available at the following link: https://www.tiktok.com/legal/page/eea/privacy-policy/hu

In the imprint of the Facebook page (About/Data protection and legal information/Data protection policy) there is a direct, clickable link to this information.

Scope of processed personal data:

  • Your registered name on the social media site;
  • or the user's public profile picture;

The data manager does not check the personal data provided to him. The person providing the data is solely responsible for the veracity of the data provided. 

Duration of data management:

The processing of the provided personal data in the context of contact or contact activities lasts until the Data Subject withdraws their consent.

If the Data Subject withdraws his consent, the Data Controller will immediately delete all data related to the contact based on the data deletion options provided by Facebook, Instagram and TikTok.

is not obliged to provide personal data, in case of failure to provide data, it will not be published on the website. THE

thanksgiving—names

  1. DATA MANAGEMENT RELATED TO DONATION

Purpose of data management: 

  1. If the Affected Party wishes to send a donation to the foundation, it is possible to do so by bank transfer or by bank card payment via the website. In these cases, the management of certain personal data is essential.
  1. The name of the donor and the donation, or the name of the persons who help and promote the goals of the foundation, are not public, however, if the Data Controller wishes to make an exception to this (e.g. in view of the size of the donation, or for the reason of expressing gratitude via the website), this will only be done with the prior express consent of the Data Subject you can do it in your possession.

Legal basis for data management:

  1. In case of donation by direct transfer or payment by bank card: based on the consent of the data subject pursuant to Article 6 (1) point a.) of the GDPR and Article 6 (1) point c.) of the GDPR § 169 of Act C of 2000 (1) (data processing is necessary to fulfill the legal obligation of the data controller)
  1. In the case of processing and/or disclosing the data of a donor or a person helping or promoting the foundation's goals: Voluntary consent of the data subject in accordance with GDPR Article 6 (1) point a)

Data processing takes place on the basis of the data subject's voluntary consent based on appropriate information, which the data subject gives by sending the request and the data contained therein to the Data Controller in the scope necessary to respond to the request and process its contents.

Scope of processed personal data:

  1. In case of donation by direct transfer or bank card payment:
  •  bank transfer data: donor's name, bank account number, name of the account holder's bank, donation amount, date of transfer, possibly personal data in the communication, and e-mail address;
  • in the case of bank card payment, data: donor's name, email address;
  1. In the case of storing the data of a donor or a person helping and promoting the goals of the foundation:
  • name;
  • optionally phone number;
  • optionally an email address;

Duration of data management:

  1. In the case of a donation: according to Section 169 (1) of Act C of 2000, for 8 years from the date of acceptance of the accounting report containing the donation;
  1. Storage of the data of a donor or a person who helps and promotes the goals of the foundation: until the consent of the person concerned is withdrawn.
  1. Data management related to sending newsletters

Purpose of data management:

The purpose of data management is to send a letter promoting the foundation's goals and providing information to interested parties (for example, about the balance of the collected donation, media appearances, holding events, the development of Ádin Kneifel's health condition).

The purpose of the foundation is primarily to support the medical treatment of children suffering from Duchenne muscular dystrophy (DMD), Ádin Kneifel, who suffers from Duchenne muscular dystrophy (DMD), and secondly, if additional financial resources are available, to improve their living conditions and quality of life, to help them recover increasing their chances. The aim of the foundation is to contribute to the healing of the beneficiary and children suffering from Duchenne muscular dystrophy, and to create funds through donation and support collection campaigns for curative activities related to Duchenne muscular dystrophy, as well as to cover all direct costs related to medical treatments.

Legal basis for data management:

Based on point a) of Article 6 (1) of the GDPR - the voluntary consent of the data subject

Voluntary, informed and definite consent of the data subject, which the data subject gives by signing up (checking a checkbox).

Personal data processed:

  • Surname and First Name;
  • E-mail address,

Duration of data management:

Until the consent of the person concerned is withdrawn, which can be done by clicking on the unsubscribe button at the bottom of the newsletter, but for a maximum of one year from the date of subscription.

  1. image and video recording data management

Purpose of data management:

Broadly communicating and popularizing the purpose of the foundation by publishing video and photo recordings of events organized by the foundation or with public figures and influencers on the Data Controller's website and social media pages (Facebook, Instagram, TikTok). 

Legal basis for data management: 

  1. In the case of mass recordings, the data management - point e) of Article 6 (1) of the GDPR, and the Info tv. Based on point b) of § 5 paragraph (1) - it is based on a legal provision. The legal provision is as follows: the Civil Code. 2:48 a.m. § (2), according to which the consent of the data subject is not required for the preparation and use of an image or sound recording in the case of a mass recording or a recording of a public appearance.

Crowd shots show a multitude of people, the depicted persons are not seen as individual persons, but as parts of the crowd. If the individuals in the picture do not draw attention to themselves individually, but are present as a crowd, it is a mass photograph.

  1. If it is not mass recording, the voluntary consent of the Data Subject is required for the production and management of the image and video.

Data management - point a) of Article 6 (1) of the GDPR, and Info tv. Based on point a) of section 5 (1) - it is based on his voluntary consent.

The consent of the person concerned is required for the preparation and use of a recording specifically made of a specific person(s). The same applies in the case of standing out from the crowd - with any recording technique (e.g. telephoto lens, zoom) - as it re-individualizes the image, and in such a case, the consent of the person concerned is required for the creation and use of the image. If individualization takes place through subsequent editing from the mass recording, consent is also required.

Scope of processed personal data:

  • Picture and video recording

Duration of data management:

The Data Controller only manages the recordings (on its own internal platform, website, social media platforms, etc.) as long as they are of interest and are relevant, after which they are deleted or even if the data subject withdraws his consent.

  1. The range of persons familiar with the data, data transfer, data processing

Those internal employees of the Data Controller with whom the data subject has contacted, or whose knowledge and handling of the data is related to their job duties, are entitled to see the data.

Data processors:


MEDIACENTER HUNGARY Kft.

Headquarters: 6000 Kecskemét, Erkel Ferenc utca 5. Company registration number: 03-09-114492 Tax number: 13922546-2-03

hosting service (for the proper operation of the website)


Temarketinged Kft.

Headquarters: 4024 Debrecen, Wesselényi utca 1. Company registration number: 09-09-034197 Tax number: 32037704-2-09

provision of website development and maintenance services, as well as marketing activities
Tárkáni Law OfficeHeadquarters: 4026 Debrecen, Bethlen u. 6-8. D. III/27. Tax number: 18569993-2-09

performance of legal duties

KAMOKIRÓ Kft.

Headquarters: 4026 Debrecen, Gyergyó utca 5. 1. em. 5th door Company registration number: 09-09-020537 Tax number: 23153855-2-09

accounting activity (to fulfill tax and accounting obligations)
Stripe Inc.Headquarters: 510 Townsend Street, San Francisco, CA 94103, USA Email: support@stripe.com Website: https://stripe.commaking an online payment 

Data management information: https://stripe.com/en-hu/privacy
PayPalRegistered Office: PayPal (Europe) S.à.rl et Cie, SCA, 22-24 Boulevard Royal L-2449, Luxembourg Website: https://www.paypal.com/humaking an online payment 
Data management information: https://www.paypal.com/hu/webapps/mpp/ua/privacy-full
K&H Bank Zrt.Headquarters: 1095 Budapest, Lechner Ödön fasor 9.
Company registration number: 01-10-041043

Tax number: 10195664-4-44
Payment by bank transfer
  1. Rights of the Data Subject

The rights of the data subject: The affected 

a) may request information on the management of personal data relating to him, as well as access to this personal data,

b) may request their correction,

c) may request their deletion,

d) may request the restriction of the processing of personal data,

e) can object to the processing of personal data,

f) exercise your right to data portability.

g) can exercise his right to legal remedy. 

As specified at the end of this information, the data subject may submit a complaint to the National Data Protection and Freedom of Information Authority (hereinafter: "NAIH") or to the competent court.

  1.  Enforceable rights of data subjects in relation to data management 

The data controller ensures that the rights of the data subjects are enforced as follows.

The data controller provides the data subject with the opportunity to submit his or her request regarding the exercise of the data subject's rights in any of the following ways and through the contact information provided in this information: (i) by post, (ii) by e-mail, (iii) by telephone.

Phone: 0630-507-1668

Email: egyuttadinkezetfogva@gmail.com

Mailing address: 4034 Debrecen, Hétvezér utca 47.

The data controller fulfills the data subject's request without undue delay, but in any case within 30 days of receipt of the request, and informs the data subject of this in a concise, transparent, understandable and easily accessible form, clearly and comprehensibly worded. The Data Controller also decides on the refusal of the request within this deadline and informs the data subject about the refusal of the request, the reasons for this, and the relevant legal remedies available to the data subject.

As a general rule, the data controller fulfills the data subject's request by e-mail, unless the data subject requests otherwise. Telephone information can only be provided at the request of the data subject if the data subject has verified his identity. The data controller does not use the postal address or telephone number of the data subject for any other purpose.

The data controller does not charge a fee or reimbursement for fulfilling the requests of the data subjects - detailed below. However, in the event that a new unfounded, excessive, request for the same data is received from the data subject within one year of the previous, already fulfilled request, the Data Controller reserves the right to establish a reasonable reimbursement for the fulfillment of the request, commensurate with the workload related to the fulfillment or, in its discretion, refuses to act on the basis of the request with adequate justification.

  • Right to information and access

At the request of the data subject, the data controller provides information about the following information in a concise, transparent, understandable and easily accessible manner, in a clear and comprehensible manner:

  • about whether your personal data is being processed by the Data Controller;
  • the name and contact details of the Data Controller;
  • about the personal data managed by the relevant Data Controller and their source;
  • the purpose of processing personal data and the legal basis of data processing;
  • on the duration of data management;
  • about the recipients or categories of recipients to whom or to whom the personal data has been disclosed or will be disclosed;
  • about the rights of the data subject;
  • about the circumstances, effects of the possible data protection incident and the measures taken to prevent it.
  • Right to rectification

The data controller corrects inaccurate personal data concerning the data subject at the request of the data subject.

The data controller informs all recipients of the correction to whom or to whom the personal data was communicated, unless this proves to be impossible or requires a disproportionately large effort. At the request of the data subject, the Data Controller informs the data subject about these recipients.

  • Right to erasure ("forgetfulness").

At the request of the data subject, the Data Controller deletes the personal data concerning the data subject if one of the following reasons exists:

  • the personal data is no longer needed for the purpose for which it was collected or otherwise processed;
  • the data subject objects to data processing;
  • personal data was handled unlawfully by the Data Controller;
  • the personal data must be deleted in order to fulfill the legal obligation prescribed by EU or Hungarian law applicable to the Data Controller.

The data controller informs all recipients of the deletion to whom or to whom the personal data was disclosed, unless this proves to be impossible or requires a disproportionately large effort. At the request of the data subject, the Data Controller informs the data subject about these recipients.

  • Right to restriction of data processing

At the request of the data subject, the Data Controller restricts data processing if one of the following conditions is met:

  • the data subject disputes the accuracy of the personal data - in this case, the limitation applies to the period that allows the Data Controller to check the accuracy of the personal data;
  • the data processing is illegal, but the data subject opposes the deletion of the data and instead requests the restriction of its use;
  • the Data Controller no longer needs the personal data for the purpose of data management, but the data subject requires them to present, enforce or defend legal claims.

The data controller informs all recipients of the restriction to whom or to whom the personal data has been disclosed, unless this proves to be impossible or requires a disproportionately large effort. At the request of the data subject, the Data Controller informs the data subject about these recipients.

  • Right to data portability

At the request of the data subject, the data controller makes available to the data subject the personal data provided by the data subject. The Data Controller further undertakes that the data subject may forward these personal data to another data controller without the Data Controller preventing this.

  • Right to a remedy

If the data subject believes that the Data Controller has violated his right to the protection of personal data in the course of his data management, he may seek legal redress in accordance with the applicable legislation with the competent bodies, i.e. file a complaint with the NAIH (address: H-1055 Budapest, Falk Miksa utca 9- 11.; postal address: 1363 Budapest, Pf. 9..; website: www.naih.hu; e-mail address: ugyfelszolgalat@naih.hu; telephone number: +36-1/391-1400), or to the competent court can turn. 

The data controller undertakes to cooperate with the relevant court or the NAIH in everything during these procedures, and to release the data related to data management to the relevant court or the NAIH.

The data controller also undertakes to compensate the damage caused by the unlawful handling of the data subject's personal data or by violating data security requirements. In the event of a violation of the data subject's right to privacy, the data subject may demand damages. The data manager is exempted from liability if the damage was caused by an unavoidable cause outside the scope of data management, and if the damage or infringement caused by the violation of privacy rights results from the intentional or grossly negligent behavior of the data subject.

  1. Data security measures

The Data Controller ensures the security of the data. The data controller has taken the technical and organizational measures and established the procedural rules that ensure that the recorded, stored and managed data are protected and prevent their destruction, unauthorized use and unauthorized alteration. Furthermore, it calls on the third parties to whom the data concerned has been transmitted, that they are obliged to comply with the requirement of data security.

The Data Controller ensures that no unauthorized person can access, disclose, transmit, modify, or delete the managed data.

The Data Controller will do everything possible to ensure that the data is not damaged or destroyed. The Data Controller imposes the above commitment on its employees and partners participating in its data management activities, including data processors acting on behalf of the Data Controller.

  1. Management of data protection incidents

If the Data Controller notices an event or act resulting in the accidental or unlawful destruction, loss, modification, unauthorized transmission or disclosure of personal data transmitted, stored or otherwise handled by it, or an act resulting in unauthorized access to them (hereinafter referred to as a data protection incident), it is obliged to 33-34 GDPR. to act on the basis of Article 1, to report the data protection incident to the competent and competent data protection authority (hereinafter: NAIH), and to inform the person or persons concerned about the data protection incident, if it is likely to involve a high risk for the rights and freedoms of natural persons. 

A person who notices a data protection incident in accordance with the above with regard to personal data transmitted, stored or otherwise managed by the Data Controller can report it to the Data Controller at the following contact details:

By phone: 0630-507-1668

By email: egyuttadinkezetfogva@gmail.com

In addition to indicating the subject of the data protection incident, the person making the report must provide the following:

  • applicant's name;
  • contact details of the notifier: telephone number and/or e-mail address, 
  • the incident affects the software, if so, which part or service.  

Within 1 working day at the latest, if the incident is deemed to be serious, the Data Controller will immediately investigate the report and, if necessary, request additional information from the notifier. Within 72 hours of reporting the incident, the Data Controller shall provide data to the NAIH.

The data provision must include the following:

  • the nature of the data protection incident, including the categories and approximate number of those affected, as well as the categories and approximate number of data affected by the incident; 
  • the name and contact details of a contact person providing further information; 
  • probable consequences resulting from the data protection incident; 
  • measures taken or planned by the data controller to remedy the data protection incident, including, where appropriate, measures aimed at mitigating any adverse consequences resulting from the data protection incident.

If the data protection incident requires further investigation, the Data Controller will take the necessary steps to assess the real and possible effects of the data protection incident during the investigation with the involvement of appropriate professionals. The invited specialists will prepare a report on this. The report must contain a proposal for the security measures necessary to prevent a data protection incident.

The Data Controller decides on the measures to be taken. 

If the data controller considers that the data protection incident is likely to pose a high risk to the rights and freedoms of natural persons, the data controller shall inform the data subject of the data protection incident without undue delay.

In the information, the data controller explains the nature of the data protection incident in a clear and comprehensible way, highlighting the following: 

  • the name and contact details of the contact person providing further information; 
  • the likely consequences of the data protection incident; 
  • the measures taken or planned by the data controller to remedy the data protection incident, including, where appropriate, measures aimed at mitigating any adverse consequences resulting from the data protection incident.

The data controller does not inform the data subjects if: 

  • appropriate technical and organizational protection measures have been implemented and these measures have been applied to the data affected by the data breach, in particular measures - such as the use of encryption - that render the data unintelligible to persons not authorized to access the personal data;
  • following the data protection incident, additional measures were taken to ensure that the high risk to the rights and freedoms of the data subject is unlikely to materialize in the future;
  • providing information would require a disproportionate effort, i.e. there are so many data subjects that the Data Controller would only be able to inform them with a disproportionately large amount of effort as described above. In this case, the Data Controller will arrange for the appropriate information to be made public. 
  1. Registration of data protection incidents

The Data Controller keeps a record of the data protection incident. 

The following must be recorded in the register: 

  • the range of personal data concerned, 
  • the scope and number of those affected by the data protection incident, 
  • the date of the data protection incident,
  • the circumstances and effects of the data protection incident, 
  • the measures taken to prevent the data protection incident, 
  • other data specified in the law that prescribes data management.

The Data Manager must keep the data related to data protection incidents in the register for 5 years in the case of an incident involving personal data, and 20 years in the case of an incident involving special data.

  1. Right to a remedy

In connection with any questions or comments related to data management, the Data Controller can be contacted at one of the contact details provided in this information.

Legal remedies and complaints can also be made at the National Data Protection and Freedom of Information Authority:

Name: National Data Protection and Freedom of Information Authority

Headquarters: H-1055 Budapest, Falk Miksa utca 9-11.

Mailing address: 1363 Budapest, Pf. 9.

Telephone: +36-1-391-1400

Fax: +36-1-391-1410

Website: www.naih.hu

E-mail: ugyfelszolgalat@naih.hu

In the event of a violation of the data subject's rights, the Data Controller may go to court. The court acts out of sequence in the case. The Data Controller is obliged to prove that the data management complies with the provisions of the law. The adjudication of the lawsuit falls within the jurisdiction of the court. According to the choice of the plaintiff, i.e. the person concerned, the lawsuit can also be initiated before the court of his place of residence or residence.

The data controller undertakes to cooperate with the relevant court or the NAIH in everything during these procedures, and to release the data related to data management to the relevant court or the NAIH.

The data controller also undertakes to compensate the damage caused by the unlawful handling of the data subject's personal data or by violating data security requirements. In the event of a violation of the data subject's right to privacy, the data subject may demand damages. The data manager is exempted from liability if the damage was caused by an unavoidable cause outside the scope of data management, and if the damage or infringement caused by the violation of privacy rights results from the intentional or grossly negligent behavior of the data subject.

The data controller reserves the right to change this information at any time.

en_GBEN

Duchenne muscular dystrophy

Duchenne's muscular dystrophy is a congenital, hereditary disease characterized by the progressive destruction of muscle cells. The place of the muscle cells is filled by fat tissue and connective tissue that are incapable of muscle work, as a result of which the patient becomes weaker and weaker, until finally taking care of himself becomes a problem.

Duchenne muscular dystrophy mainly affects boys, it occurs in 1 in 3,600 boys born alive. It is found much less often in girls, they tend to carry the disease, i.e. they are not sick in this case, only the faulty gene is found in their genetic material. The actual cause of the disease is the abnormal production or lack of a protein called dystrophin. Because of this, calcium ions flow into the muscle cells in unlimited quantities, thus causing their destruction.

The disease is characterized by gradually developing, increasingly pronounced muscle weakness and a decline in intelligence. In infancy, the child is usually symptom-free, although a mild degree of muscle weakness can be observed in some of them: sometimes the difficulty in holding the head draws attention to the disease. Children usually learn to turn over, sit up, and walk in time. The disease usually becomes recognizable around the age of 3, when, due to the weakening of the muscles around the hips, the child can stand up by leaning on his knees. Climbing stairs is also a problem for him, his gait will be wobbly. In addition to these symptoms, the firmer feel of the calves and the outwardly muscular shape are striking. As age progresses, the breakdown of more and more muscle fibers occurs throughout the body. The patient's ability to walk deteriorates faster, approx. He stays until he is 10 years old, after which he is forced into a wheelchair. The symptoms of muscle weakness also affect the internal organs: due to the weakness of the pharyngeal and respiratory muscles, the patient easily swallows sideways, coughs with less force, so he is less able to cough up secretions from the lungs, which is why upper respiratory tract colds and pneumonia easily develop. For a child in a wheelchair, the function of breathing is further worsened by chest deformities and increased scoliosis. Life prospects are determined by the weakness of the respiratory muscles and the heart muscle. Later on, due to respiratory weakness, the child is put on a ventilator. In many children, the decline in intelligence is not severe, so they can complete a normal school.

The diagnosis is confirmed by genetic testing, detection of dystrophin deficiency, and CK testing. The latter test refers to the degree of muscle breakdown. Normally, this value is below 160, and in these children it is several tens of thousands. The disease continues to progress, in the final stage it also affects the heart and respiratory muscles, as a result of which patients die at the age of 20 on average.

Steroid treatment slows down the progression of weakness in childhood muscle death, but the process continues anyway, and the muscle cells break down more and more. With appropriate physical therapy, you can extend the life of the fibers that are still intact. Swimming in warm, 32-34 degree water helps to improve blood supply to the muscles. As the disease progresses, the cooperation of physiotherapist and doctor is necessary so that together with the patient they can decide on possible tendon surgery or the use of medical devices to help with movement. Surgery may also be justified in the case of advanced scoliosis.