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Privacy Policy

At Orphalan we identify, develop and provide access to innovative treatments for patients with rare diseases.

This Privacy Policy describes our practices in connection with information that we or our service providers collect through the website or application operated and controlled by us from which you are accessing this Privacy Policy. By providing personal information to us, you acknowledge that you have read and understand this privacy policy.


We may process information about you including, but not limited to:

  • General information, such as name, postal and/or email address, phone number, date of birth, job title, and other information; and
  • Digital information generated from your use of our websites and mobile applications, such as IP address, geo-localization, device ID and data transmitted via cookies. For more information on the cookies used by Orphalan please see our Cookie Policy.


2.1 – We may process your personal information for purposes including, but not limited to:

  • Responding to enquiries, and inviting individuals to our events;
  • Engaging with healthcare professional and key opinion leaders;
  • Conducting surveys and interviews with healthcare professionals to help us improve our products;
  • Providing information about our products and services;
  • Complying with regulatory obligations;
  • Improving the content, functionality and usability of our websites;
  • Personalising the content of our websites according to the user’s interests;
  • Managing and administrating our business.

2.2 – Where we process personal information, we make sure that we have a lawful basis, including:

  • Processing is necessary to perform our contractual obligations with our customers;
  • You have provided consent (in which cases, such consent can be withdrawn at any time);
  • Processing is necessary to comply with legal and regulatory obligations;
  • Processing is necessary to protect the vital interests of an individual;
  • Processing is in the public interest;
  • Processing is necessary to establish, exercise or defend our legal rights or for the purpose of legal proceedings; or
  • Processing is in Orphalan’s legitimate interests, such as managing and administrating the operation of our business effectively and efficiently; complying with internal policies and procedures; monitoring the use of our copyrighted materials; conducting scientific and statistical research; improving our products and services; and obtaining further knowledge of current threats to network security to update our security solutions and provide these to the market.


Unless we specifically request or invite it, we ask that you not send us, and you not disclose, any sensitive personal information (e.g., Social Security numbers, information related to racial or ethnic origin, political opinions, religion or philosophical beliefs, health or medical conditions, sex life or sexual orientation, criminal background, or trade union membership, or biometric or genetic data) on or through the Website or otherwise to us.


The Service is not directed to individuals under the age of 18, and we request that these individuals not provide personal information through the Website. If your child has submitted personal information and you would like to request that such personal information be removed, please contact us as explained below under Contact.


4.1 We may share your personal information within the Orphalan group of companies for the purposes described above.

4.2 We may also share your personal information outside of the Orphalan group for the following purposes:

  • with our business partners. For example, this could include our partners from whom you or your company or your organisation purchased the Orphalan product(s). Personal information will only be transferred to a business partner who is contractually obliged to comply with appropriate data protection obligations and the relevant privacy and confidentiality legislation;
  • with third party agents and contractors for the purposes of providing services to us (for example, Orphalan’s accountants, professional advisors, IT and communication and marketing providers and debt collectors). These third parties will be subject to appropriate data protection obligations and they will only use your personal information as described in this Privacy Policy;
  • to the extent required by law, for example if we are under a duty to disclose your personal information in order to comply with any legal obligation (including, without limitation, in order to comply with tax reporting requirements and disclosures to regulators), or to establish, exercise or defend its legal rights;
  • if we sell our business or assets, in which case we may need to disclose your personal information to the prospective buyer for due diligence purposes; and
  • if we are acquired by a third party, in which case the personal information held by us about you will be disclosed to the third party buyer.


5.1 Where we transfer your personal information to another country outside the EEA, we will ensure that it is protected and transferred in a manner consistent with legal requirements. In relation to data being transferred outside of Europe, for example, this may be done in one of the following ways:

  • the country that we send the data to might be approved by the European Commission as offering an adequate level of protection for Personal Data;
  • the recipient might have signed up to a contract based on “model contractual clauses” approved by the European Commission, obliging them to protect your personal information .

5.2 You can obtain more details of the protection given to your personal information when it is transferred outside Europe (including a copy of the standard data protection clauses) by contacting us as described in paragraph 10 below.


6.1 We have extensive controls in place to maintain the security of our information and information systems. Client files are protected with safeguards according to the sensitivity of the relevant information. Appropriate controls (such as restricted access) are placed on our computer systems. Physical access to areas where personal information is gathered, processed or stored is limited to authorised employees.

6.2 As a condition of employment, Orphalan employees are required to follow all applicable laws and regulations, including in relation to data protection law. Access to sensitive personal information is limited to those employees who need to it to perform their roles. Unauthorised use or disclosure of confidential client information by a Orphalan employee is prohibited and may result in disciplinary measures.


How long we will hold your personal information for will vary and will be determined by the following criteria:

  • the purpose for which we are using it – Orphalan will need to keep the data for as long as is necessary for that purpose; and
  • legal obligations – laws or regulation may set a minimum period for which we have to keep your personal information.


8.1 In all the above cases in which we collect, use or store your personal information, you may have the following rights and, in most cases, you can exercise them free of charge. These rights include:

  • the right to obtain information regarding the processing of your personal information and access to the personal information which we hold about you;
  • the right to withdraw your consent to the processing of your personal information at any time. Please note, however, that we may still be entitled to process your personal information if we have another legitimate reason for doing so. For example, we may need to retain personal information to comply with a legal obligation;
  • in some circumstances, the right to receive some personal information in a structured, commonly used and machine-readable format and/or request that we transmit those data to a third party where this is technically feasible. Please note that this right only applies to personal information which you have provided directly to Orphalan;
  • the right to request that we rectify your personal information if it is inaccurate or incomplete;
  • the right to request that we erase your personal information in certain circumstances. Please note that there may be circumstances where you ask us to erase your personal information but we are legally entitled to retain it;
  • the right to request that we restrict our processing of your personal information in certain circumstances. Again, there may be circumstances where you ask us to restrict our processing of your personal information but we are legally entitled to refuse that request; and
  • the right to lodge a complaint with the relevant data protection regulator if you think that any of your rights have been infringed by us.

8.2 You can exercise your rights by contacting us using the details listed in paragraph 10 below.


9.1 Orphalan’s registered office may be contacted using the following contact information:

Orphalan SA
226 Boulevard Voltaire
75011 Paris
Email Address:


10.1 If you have any questions or concerns about Orphalan’s handling of your Personal Data, or about this Policy, please contact our Legal Department using the following contact information:

Orphalan SA
Legal Department
226 Boulevard Voltaire
75011 Paris

Email Address:

10.2 We are usually able to resolve privacy questions or concerns promptly and effectively. If you are not satisfied with the response you receive, you may escalate concerns to the applicable privacy regulator in your jurisdiction. Upon request, Orphalan’s Legal Department will provide you with the contact information for that regulator.


11.1 – We may change this Privacy Policy at any time. Any changes will become effective when we post the revised Privacy Policy on this website. Your use of our services following these changes means that you accept the revised Privacy Policy. We recommend that you regularly review the Privacy Policy when you visit our website.

11.2 – This policy was last updated in February 2024.