Recordati Rare Diseases (“We” our”, “us”) recognizes the importance of protecting the privacy of personal data we may receive about Patients (“you”, “your”) as visitors by visiting this website and we are committed to protecting and respecting your privacy.
This policy (together with our Terms of Use, our Cookies Policy and any other documents referred to on it) sets out the basis on which any personal data we collect from you, or that you provide to us, will be processed by us by visiting our website. Please read the following carefully to understand our views and practices regarding your personal data and how we will treat it. By visiting www.mysylvant.com (the “Site”) you acknowledge that you have read and understood the practices described in this policy.
This website is a disease awareness website operated by Recordati Rare Diseases. Its content is addressed only to adult iMCD patients who are HHV-8 and HIV negative, already in treatment with SYLVANT (siltuximab), a FDA/EMA approved therapy for idiopathic Multicentric Castleman Disease (iMCD), from the United Kingdom and Europe. For the purpose of the UK Data Protection Act 2018 (the Act) and the EU General Data Protection Regulation (GDPR), the controller is Recordati Rare Diseases of Breakspear Park, Breakspear Way, Hemel Hempstead, Hertfordshire, HP2 4TZ.
In most cases, we will collect data directly from you (e.g., when you visit our website; you contact us). In particular, we will collect and process the following data about you:
The information you give us may include your name, address, e-mail address and phone number, financial and credit card information.
Information we receive from other sources. This is information we receive about you if you use any of the other websites we operate (as mentioned above) or the other services we provide. In this case we will have informed you when we collected that data if we intend to share those data internally and combine it with data collected on this Site. We will also have told you for what purpose we will share and combine your data. We are working closely with third parties (including, for example, healthcare professionals, business partners, sub-contractors in technical, payment and delivery services, advertising networks, analytics providers, search information providers, credit reference agencies). We will notify you when we receive information about you from them and the purposes for which we intend to use that information.
Our website uses cookies to distinguish you from other users of our website. This helps us to provide you with a good experience when you browse our website and also allows us to improve our Site. For detailed information on the cookies we use and the purposes for which we use them see our Cookie policy.
In order to comply with applicable data privacy laws, we are required to set out the legal basis for the processing of your personal data. In accordance with the purposes for which we collect and use your personal data, as set out above, the legal basis for us processing your personal data will typically be one of the following:
We use information held about you in the following ways:
We may share your personal information with:
We will disclose your personal information to third parties:
We will take all steps reasonably necessary to ensure that your data is treated securely and in accordance with this policy, applicable data protection laws and regulations as well as international security standards. The data that we collect from you is stored inside the European Economic Area (“EEA”) and accessed and used subject to our security policies and standards. All information you provide to us is stored on our secure servers. We have implemented reasonable physical, technical and managerial controls and safeguards to keep your personal data protected from unauthorised access, disclosure, alteration, and destruction. Your access to your personal data is limited to a restricted number of our staff whose duties reasonably require such information and third parties with whom we contract to carry out business activities on our behalf. Our staff has been trained on the importance of privacy and how to handle and manage personal information appropriately and securely. However, your information may also be transferred within or outside the EU/EEA where privacy laws may be less strict than in the EU-EEA/UK.
In such case, we will implement reasonable and appropriate legal, technical and organizational security measures with the aim to ensure the security of the processing and in particular to protect your personal data from unauthorised access, use or disclosure. In the absence of an adequacy decision adopted by the European Commission or a competent data protection authority, we will implement appropriate data transfer mechanisms (such as the UK or EU Standard Contractual Clauses) for any cross-border data transfers located in a non-EU/EEA third country with the aim to secure such transfers and achieve an adequate level of data protection.
Unfortunately, the transmission of information via the internet is not completely secure. Although we will do our best to protect your personal data, we cannot guarantee the security of your data transmitted to our Site; any transmission is at your own risk. Once we have received your information, we will use strict procedures and security features to try to prevent unauthorised access.
We will keep your personal data for as long as we need it for the purposes set out above, and so this period will vary depending on your interactions with us. Data may be retained for a longer duration where applicable laws or regulations require, or allow us to do so. Where we no longer have a need to keep your information, we will delete it.
Under applicable data protection laws and subject to any legal restrictions, you may have the right to request us to: (i)access information held about you(ii) request access to all the personal data we hold about you; (iii) request that any inaccurate personal data we hold be corrected; (iv) to object to certain types of processing of your personal data we carry out (including the right to opt-out of any direct marketing); (v) request that we delete the personal data we hold about you; (vi) to request a copy of your personal data in a machine reasonable, commonly used format (or to request we transfer your personal data in such a format to a third party service provider); (vii) restrict certain aspects of the processing of your information and (viii) to stop a particular processing when you withdraw your consent.
You can exercise these rights by writing to us or by sending an e-mail to privacy@recordati.com.
For EU residents: In case we do not handle your request timely or if you are not satisfied with our response to any exercise of these rights, you are entitled to lodge a complaint with the competent supervisory authority of your place of residence. Further information and contact details of the European competent supervisory authorities can be found here.
For UK residents: In the UK, the responsible Data Protection Authority for the management of public complaints is the Information Commissioner’s Office (ICO); you can contact ICO here: The Information Commissioner’s Office | Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF | Website: https://ico.org.uk | Tel. +44 1625 545 700 | Helpline number: 0303 123 1113.
Our Site may, from time to time, contain links to and from the websites of our partner networks and affiliates. If you follow a link to any of these websites, please note that these websites have their own privacy policies and that we do not accept any responsibility or liability for these policies. Please check these policies before you submit any personal data to these websites as the terms in this policy apply solely to information collected by Recordati Rare Diseases.
Recordati Rare Diseases reserves the right to amend this policy from time to time to reflect technological advancements, legal and regulatory changes, and our business practices, subject to applicable laws. Any changes we make to our Privacy Policy in the future will be posted on this page. Please check back frequently to see any updates or changes to our Privacy Policy.
Questions, comments and requests regarding this privacy policy are welcomed and should be addressed to privacy@recordati.com.
Updated 10 December 2024
