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, occupation, 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:
2.2 – Where we process personal information, we make sure that we have a lawful basis, including:
2.3 – SENSITIVE INFORMATION
Unless we specifically request or invite it and ask for your prior written authorisation where required by law, we ask you not to send us, and not to disclose, any sensitive personal information or any protected healthcare 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 intended to individuals under the age of 18, and we request that these individuals not provide personal information through the Website. We protect children privacy rights in line with US Children's Online Privacy Protection Act (COPPA) and the EU General Data Protection Act (GDPR). The website does not knowingly collect, use, or disclose personal information from children without prior parental consent, except as permitted by applicable legislation.
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 Contacting Us.
4.1 We may share your personal information within the Orphalan group of companies worldwide for the purposes described above.
4.2 We may also share your personal information outside of the Orphalan group for the following purposes:
5.1 Where we transfer your personal information to another country outside the USA, we will ensure that it is protected and transferred in a manner consistent with legal requirements. In relation to data being transferred outside of USA, for example, this may be done in one of the following ways:
5.2 You can obtain more details of the protection given to your personal information when it is transferred outside USA (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 legal and disciplinary measures.
How long we will hold your personal information for will vary and will be determined by the following criteria:
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:
8.2 You can exercise your rights by contacting us using the details listed in paragraph 10 below.
9.1 CCPA Privacy Notice (Notice for California Consumers)
The California Consumer Privacy Act, as amended by the California Privacy Rights Act (collectively, “CCPA”) gives California residents the right to know what Personal Information Orphalan SA (“Orphalan,” “we,” “us,” or “our”) collects about them, including whether it is being sold or disclosed to third parties. “Personal Information” (or “PI”) means any information that identifies, relates to, describes, or is capable of being associated with you or your household, whether directly or indirectly.
The types of Personal Information we collect and disclose depends on your relationship and interaction with us. Please review the information below to learn about our data collection and disclosure practices generally. The information below describes the categories of personal information we have collected in the preceding 12 months, including the categories of data sources from which the personal information was collected, the purposes for collecting or disclosing the PI, and the third parties to whom we disclose the personal information.
We have not sold or shared PI about California consumers in the past twelve months. Relatedly, we do not have actual knowledge that we sell or share PI of California consumers under 16 years of age. For purposes of the CCPA, a “sale” is the disclosure of PI to a third party for monetary or other valuable consideration without the data subject directing us to do so.
To “share” is the disclosure of PI to a third party for cross-context behavioural advertising, whether or not for monetary or other valuable consideration, without the data subject directing us to do so.
We may collect and disclose any and all PI to our service providers and corporate affiliates (but only as necessary or appropriate to perform legitimate business purposes). We also collect and disclose any and all PI as necessary to: comply with laws and regulations; for compliance reasons and legal and regulatory requirements; comply with civil, criminal, judicial, or regulatory inquiries, investigations, subpoenas, or summons; and exercise or defend our legal rights and our employees, affiliates, customers, contractors, and agents. In case of change to the above we will provide you notice in advance.
9.2 Rights under CCPA
You can limit the use of your SPI to the CCPA authorized purposes.
You can exercise your rights by writing an email to the address specified at Section 10.
Verification: if you exercise your above rights we must first verify your identity to make sure that you are the person about whom we have collected PI.
9.3 Disclosure About Direct Marketing for California Residents
California Civil Code § 1798.83 Disclosure statement: We do not distribute your PI to other entities for their own direct marketing purposes.
Notice (required information on the PI we collect):
Identifiers: A real name, alias, postal address, unique personal identifier, online identifier, internet protocol (IP) address, email address, account name, phone number or other similar identifiers. (not an exhaustive list)
Source(s) of PI:
Purpose(s) for Collection or Disclosure of the PI:
Third Parties to Whom We Disclose PI:
Third Parties to Whom We Sell PI:
Network Activity Data: Internet or other digital network activity information, such as browsing & search history, and information regarding an individual’s interaction with an internet website, application, or advertisement. (not an exhaustive list)
Source(s) of PI:
Purpose(s) for Collecting or Disclosing PI:
Third Parties to Whom We Disclose PI:
Third Parties to Whom We Sell PI:
10.1 If you have any questions or concerns about Orphalan’s handling of your Personal Data, or about this Policy, please contact our Data Privacy Officer using the following contact information:
Address:
Orphalan Inc.
159 North Sangam on Street, Suite 200,
Chicago,
Illinois 60607, United States of America
Email Address: dataprivacy@orphalan.com
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 Data Privacy Officer 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 2023.
CUVRIOR is a copper chelator indicated for the treatment of adult patients with stable Wilson disease who are de-coppered and tolerant to penicillamine.
The most common adverse reactions (>5%) are abdominal pain, change of bowel habits, rash, alopecia, and mood swings.
To report SUSPECTED ADVERSE REACTIONS, contact Orphalan at 1-800-961-8320 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
Please see full Prescribing Information.