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Institute for rare diseases » Registration of a rare disease patient
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  • Registration of a rare disease patient

    Print | Tuesday 10 January 2012 | 21,929 views
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    • The Information Centre for Rare Diseases and Orphan Drugs (ICRDOD) is obliged and engaged with the implementation of all necessary technical and organizational means, in order to protect your personal data from unauthorized access and use. You have the right to send a written petition to ICRDOD, by which you can ask for a confirmation for the existing personal data, concerning you; Update or change your data; Clarify the conformity with the law of the storage and processing of your personal data; Forbid ICRDOD to share entirely or partially your data for commercial information, advertisement or market surveys; Ask to be informed, before your data is revealed for the first time. Sharing of your personal data to third-party is permitted only if the respective individual has given his consent in advance; Data sources are public registers or documents, containing public information; This data will protect the health and life of the individual, as well as in cases when his/her condition is not permitting to provide with informed consent or there are juridical obstacles for this. This data are officially asked by the prosecution or police authorities in order to protect the concurrency and users after the law. This data are necessary for scientific, research or statistical purposes, but guaranteeing anonymity for the individual.

      For any question or comments, regarding your personal data protection, please contact us: Information Centre for Rare Diseases and Orphan Drugs // e-mail: info@raredis.org // phone: +359-897-858870

      !!!IMPORTANT!!! By completing and sending this registration form, you provide us with your informed consent to be included in our database and agree with the above privacy policy of the Information Centre for Rare Diseases and Orphan Drugs.

    Privacy Policy

    The Institute for Rare Diseases is committed to honoring and respecting the privacy and anonymity of the individuals using its website and services. The Institute collects personal information only when it is voluntarily provided for a particular service. The information collected concerns only communication details.

    The Institute adheres to the Bulgarian and European Union laws on protection of personal data. Any personal information voluntarily provided by users and visitors of the Institute’s website is kept in the strictest confidence. No information is shared with any third party.

    The Institute collects impersonal data for technical and statistical purposes. Impersonal information is always collected when someone visits the Institute’s website to improve the Institute’s website and services.

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