Privacy policy

Welcome to the RecordatiRareDiseases.com/us website (together with the websites of all related entities, the “Site”). The Site is owned by Recordati Rare Diseases Inc. (“RRD”). This Privacy Policy is designed to tell you about our practices regarding the collection, use and disclosure of information you may provide on the Site. Please read the entire Privacy Policy before submitting information on the Site. This Site is intended for the use by residents of the United States.

The Site is an interactive online service operated by Recordati Rare Diseases Inc. (“RRD”). By using the Site, you signify your agreement to these Terms of Use and RRD’s Privacy Policy. Whenever you submit information via this site, you consent to the collection, use and disclosure of that information in accordance with this Privacy Policy and the Terms of Use.

What Information is Collected?

We may ask you to provide us with personal information in certain areas of our site on a voluntary basis.

In particular, you may be asked to provide information in the following situations:

Information Requests: If you submit an e-mail requesting or providing information, we will use this information to respond to your request. In order to respond to your request we may make personal information that you submit in these sections available to RRD, our affiliates, and, in some circumstances to certain of our service providers. These entities may be located primarily within the U.S. and countries within the European Union.
Careers Services: If you want to apply for a position with RRD through the Site, you will be asked to submit general information (such as your name and email address), together with a copy of your resume. Your resume may be transferred to any of the RRD affiliates throughout the world. RRD will use this information for purposes of processing your hiring application and for corresponding with you. RRD is an equal opportunity employer.
Cookies and other Passive Information: We or our service providers may collect technical information automatically from your computer or mobile device over time through the use of cookies or similar tracking technologies (collectively, “Cookies”). A cookie is a small text file that can be placed on your device with your permission. For more information on how we use this information, see the Section on Cookies, below. Some of the information that you submit to us may be “personally identifiable information” (that is, information that can be uniquely identified with you, such as your full name, address, e-mail address, phone number, and so on). By voluntarily providing and submitting this information to us, you knowingly consent to our use of this information in accordance with this Privacy Policy. You are under no obligation to provide this personally identifiable information to us. If you do not want us to collect your personally identifiable information, please do not provide it to us.

RRD may also collect non-personal information, such as IP addresses, numbers of site visits and tracking patterns of page viewing in order to monitor the performance of the site and to make improvements to it.

Sharing and Disclosure of Information

Personally identifiable information may be used, by way of example, for such purposes as to deliver services, such as information, newsletters or other information that you request; to develop or continue a business relationship with you; to respond to your requests for information about products or services or to respond to any other question posed by you; for employment purposes; and for legal compliance, such as adverse event reporting.

We may share or disclose your personally identifiable information in the following instances:

To contractors if necessary to support our business (e.g., technical support providers);
To protect the personal safety of users of RRD products and services, the website or the public;
In connection with the sale, assignment or other transfer of the business of this site; or
If required to do so by applicable laws, court orders, government regulations or authorities.

We do not sell any personal information as such terms are defined under applicable laws including the California Consumer Privacy Act (CCPA).

Cookies:

We use Cookies to better understand, customize and improve user experience with the Site as well as to manage various marketing and other programs. For example, we use web analytics services that leverage Cookies to help us to understand how visitors engage with and navigate the Site. We are also able to offer our visitors a more customized, relevant experience on the Site using Cookies by delivering content and functionality based on your preferences and interests. If we have collected your personal data, e.g., through a registration or a request for certain materials, we may associate this personal data with information gathered through Cookies. This allows us to offer increased personalization and functionality on the Site.

A Cookie does not give us access to your computer or provide any information other than the data you choose to share. The personal information we may obtain through Cookies includes:

Unique identifiers, such as IP address, browser type, operating system, the pages you view on the Sites, the pages you view immediately before and after you access the Site, and the search terms you enter on the Site, Internet or other electronic network activity information;
General location data; and
Inferences drawn from the above categories.

We may use Google Analytics, which uses Cookies and similar technologies to collect and analyze information about use of the Site and report on activities and trends. This service may also collect information regarding the use of other websites, apps and online resources. You can learn about Google’s practices by going to www.google.com/policies/privacy/partners/.

Access and Correction:

You have a right to know about the personal information that RRD holds about you. You also have a right to correct, amend or delete the information that RRD holds about you if it is incorrect. If you wish to exercise these rights please contact us by post or e-mail at the address shown in the “Contact” section below.

External Links

This website provides links to various websites that we do not control. When you click on one of these links, you will be transferred out of our website and connected to the website of the organization or company that you selected. Even if an affiliation exists between our website and a third-party website, we exercise no control over linked sites. Each of these linked sites maintains its own independent privacy and/or data collection policies and procedures. If you visit a website that is linked to our site, you should consult that site’s privacy policy before providing any personal information.

Security

This website incorporates appropriate safeguards to protect the security, integrity, completeness, accuracy and privacy of the personal information we have collected and we have put in place reasonable precautions to protect information from loss, misuse and alteration. Our security and privacy policies are periodically reviewed and enhanced as required and only authorized individuals have access to the information you provide us.

Terms and Modifications to Privacy Policy

RRD may modify this Privacy Policy at any time, at its discretion and modifications are effective upon being posted on this site. You are responsible for reviewing this Privacy Policy periodically to ensure that you are aware of any changes to it.

Children

This site is not directed to children and RRD does not knowingly solicit information from any child under the age of 18. We will not knowingly collect personally identifiable information via the Site from visitors in this age group.

International Users

This website is intended for use only by U.S. residents and you have indicated that you are a U.S. resident by entering this website. To access our global site, please visit www.recordatirarediseases.com.

If you are visiting from the European Union or other regions with laws governing data collection and use that may differ from U.S. law, please note that you are transferring your personally identifiable information to the United States which does not have the same data protection laws as the EU and by providing your personally identifiable information You consent to: (a) the use of your personally identifiable information for the uses identified above in accordance with this privacy policy; and (b) the transfer of your personally identifiable information to the United States as indicated above.

Privacy Policy for California Residents

This Privacy Policy for California Residents ("California Privacy Policy") only applies to visitors to our websites and users of our services that reside in the State of California. For purposes of this California Privacy Policy, the term “personal information” does not include: (a) information subject to HIPAA or the California Confidentiality of Medical Information Act; (b) deidentified or aggregated consumer information; or (c) publicly available information that (i) has been lawfully made available from government records; (ii) we have a reasonable basis to believe has lawfully been made available to the general public by you or from widely distributed media; or (iii) has been made available by a person to whom you disclosed the information unless you restricted such information to a specific audience.

Notice at Collection. This Notice at Collection ("Notice") is to inform you that Recordati Rare Diseases ("RRD") is collecting your personal information to support its business operations, including for the business purposes listed in the chart below.

Personal Information Category	Retention Period	Business Purpose	Sold or Shared
Identifiers, such as name, date of birth, and contact information	Until unsubscribe or Opt-out	Patient Disease Education	Shared – Permission/Opt-In based cross context behavioral advertising
California Customer Records personal information, such as name and contact information	Until unsubscribe or Opt-out	Patient Disease Education	Shared – Permission/Opt-In based cross context behavioral advertising
Commercial information, such as records of services you have purchased	For the duration of RRD contract with third party	Digital Infrastructure for Advertising	Shared – Permission/Opt-In based cross context behavioral advertising

If you have any questions about this Notice or need to access it in an alternative format due to having a disability, please contact info@recordatirarediseases.com or 1-908-236-0888.

Sources of Personal Information. We obtain the categories of personal information we collect from the following categories of sources:

Directly from you. For example, when you communicate with us electronically, via a verbal consent through RRD’s U.S. partners or via a printed enrollment form.
Indirectly from you. For example, from observing your actions on our website.
Internet cookies.
Data analytics providers
Marketing agencies.

Our Use of Personal Information. We use the personal information we collect in accordance with the Use and Sharing of Personal Information section above. We will not use the personal information we collected for materially different, unrelated, or incompatible purposes without providing you notice.

Sharing of Your Personal Information. We may share your personal information by disclosing it to a third party for a business purpose. We only make these business purpose disclosures under written contracts that describe the purposes, require the recipient to keep the personal information confidential, and prohibit using the disclosed information for any purpose except performing the contract. We will not sell the personal information we collect. However, based on your opting in to the promotion, we may share it with third parties for cross-context behavioral advertising. To opt-out of participation in the promotion you may use the unsubscribe/opt-out links provided to you.

In the preceding twelve (12) months, RRD has disclosed personal information for the business purposes to data analytics providers and marketing agencies as described in the chart below.

Personal Information Category	Category of Third-Party Recipients	Category of Third-Party Recipients
	Business Purpose Disclosures	Sales
A: Identifiers.	Opt-in based cross context behavioral marketing to	None

California privacy rights. In addition to the rights described elsewhere in this Privacy Policy for California Residents, the CCPA provides consumers (California residents) with specific rights regarding their personal information. This section describes your CCPA rights and explains how to exercise those rights.

Right to Know and Data Portability
You have the right to request that we disclose certain information to you about our collection and use of your personal information over the past 12 months (the "right to know"). Once we receive your request and confirm your identity (see Exercising Your Rights to Know, Delete, or Correct), we will disclose to you:

The categories of personal information we collected about you.
The categories of sources for the personal information we collected about you.
Our business or commercial purpose for collecting, selling, or sharing that personal information.
The categories of third parties to whom we disclose that personal information.
If we sold, shared, or disclosed your personal information for a business purpose, two separate lists disclosing:
- The categories of personal information that we sold or shared about you and the categories of third parties to whom the personal information was sold or shared; and
- The categories of personal information that we have disclosed for a business purpose and the categories of persons to whom it was disclosed for a business purpose.
The specific pieces of personal information we collected about you (also called a data portability request).

Right to Delete
You have the right to request that we delete any of your personal information that we collected from you and retained, subject to certain exceptions (the "right to delete"). Once we receive your request and confirm your identity (see Exercising Your Rights to Know, Delete, or Correct), we will review your request to see if an exception allowing us to retain the information applies. We may deny your deletion request if retaining the information is necessary for us or our service provider(s) to:

Complete the transaction for which we collected the personal information, provide a good or service that you requested, take actions reasonably anticipated within the context of our ongoing business relationship with you, or otherwise perform our contract with you.
Detect security incidents, protect against malicious, deceptive, fraudulent, or illegal activity, or prosecute those responsible for such activities.
Debug products to identify and repair errors that impair existing intended functionality.
Exercise free speech, ensure the right of another consumer to exercise their free speech rights, or exercise another right provided for by law.
Comply with the California Electronic Communications Privacy Act (Cal. Penal Code § 1546 et. seq.).
Enable solely internal uses that are reasonably aligned with consumer expectations based on your relationship with us.
Comply with a legal obligation.
Make other internal and lawful uses of that information that are compatible with the context in which it was provided to us.
We will delete or deidentify personal information not subject to one of these exceptions from our records and will direct the same of our service providers, contractors, and, unless impossible or involves disproportionate effort, all third parties to whom we sold or shared the information.

Right to Correct
You have the right to request that RRD correct inaccurate personal information that we maintain about you. Once we receive your request and confirm your identity (see Exercising Your Rights to Know, Delete, or Correct), we will review your request and use commercially reasonable efforts to correct the inaccurate personal information.

Exercising Your Rights to Know, Delete, or Correct
To exercise your rights described above, please submit a request by either:

Calling us at 1-908-236-0888
Emailing us at info@recordatirarediseases.com

Please note that household data is exempted from our right to know, deletion, and correction response obligations. Please also note that you may only submit a request to know twice within a 12-month period.

Only you, or someone legally authorized to act on your behalf, may exercise your rights. If you would like to submit a request on behalf of another person as that person’s authorized agent, unless you are the person’s power of attorney, you will be required to: (1) provide proof that the person gave you signed permission to submit the request; and (2) verify your identity with us.

If you make a request related to personal information about you, you will be required to supply a valid means of identification as a security precaution. We will verify your identity with a reasonably high degree of certainty using the following procedure where feasible: we will match identifying information you provide when making the request to the personal information maintained by us or use a third-party identity verification service. If it is necessary to collect additional information, we will use the information only for verification purposes and will delete it as soon as practicable after complying with your request. For requests related to particularly sensitive information, we may require additional proof of your identity. You must describe your request with sufficient detail that allows us to properly understand, evaluate, and respond to it.

We cannot respond to your request or provide you with personal information if we cannot verify your identity or authority to make the request and confirm the personal information relates to you. You do not need to create an account with us to submit a request to know or delete. However, we do consider requests made through your password protected account sufficiently verified when the request relates to personal information associated with that specific account.

Note: For instructions on exercising your sale opt-out or opt-in rights, see Personal Information Sales and Sharing Opt-Out and Opt-In Rights. For instructions on exercising your right to limit our use of your sensitive personal information, see Right to Limit Our Use of Your Sensitive Personal Information.

Response Timing and Format
We will confirm receipt of your request within ten (10) business days. If you do not receive confirmation within the 10-day timeframe, please contact info@recordatirarediseases.com. We endeavor to substantively respond to a verifiable consumer request within forty-five (45) days of its receipt. If we require more time (up to another 45 days), we will inform you of the reason and extension period in writing. If you have an account with us, we will deliver our written response to that account. If you do not have an account with us, we will deliver our written response by mail or electronically, at your option.

Any disclosures we provide will only cover the 12-month period preceding our receipt of your request. The response we provide will also explain the reasons we cannot comply with a request, if applicable. For data portability requests, we will select a format to provide your personal information that is readily useable and should allow you to transmit the information from one entity to another entity without hindrance.

We do not charge a fee to process or respond to your verifiable consumer request unless it is excessive, repetitive, or manifestly unfounded. If we determine that the request warrants a fee, we will tell you why we made that decision and provide you with a cost estimate before completing your request.

Right to Limit Our Use of Your Sensitive Personal Information
To the extent that we collect sensitive personal information about you, you have the right to direct that we limit our use of your sensitive personal information to only such uses which are necessary in order to:

Perform the services reasonably expected by an average consumer who requests such services;
Help to ensure security and integrity to the extent the use of the sensitive personal information is reasonably necessary and proportionate for these purposes;
Carry out a short-term, transient use, including, but not limited to, nonpersonalized advertising shown as part of your current interaction with us, provided that your sensitive personal information is not disclosed to another third party and is not used to build a profile about you or otherwise alter the consumer’s experience outside your current interaction with us;
Perform services on our behalf, including maintaining or servicing accounts, providing customer service, processing or fulfilling orders and transactions, verifying customer information, processing payments, providing financing, providing analytic services, providing storage, or providing similar services on our behalf; and/or
Undertake activities to verify or maintain the quality or safety of a service or device that is owned, manufactured, manufactured for, or controlled by us, and to improve, upgrade, or enhance the service or device that is owned, manufactured, manufactured for, or controlled by us.

To exercise your right to limit our use of your sensitive personal information, contact us at info@recordatirarediseases.com.

Personal Information Sales and Sharing Opt-Out and Opt-In Rights
If you are age 18 or older, you have the right to direct us to not sell or share your personal information at any time (the "right to opt-out"). We do not sell or share the personal information of consumers we actually know are less than 18 years old. Consumers who opt-in to personal information sales or sharing may opt-out of future sales or sharing at any time.

To exercise the right to opt-out, you (or your authorized representative), you may contact us at info@recordatirarediseases.com or use the unsubscribe/opt-out links provided to you.

Once you make an opt-out request, we will wait at least twelve (12) months before asking you to reauthorize personal information sales or sharing. However, you may change your mind and opt back in to personal information sales and sharing at any time contacting us at info@recordatirarediseases.com.

You do not need to create an account with us to exercise your opt-out rights. We will only use personal information provided in an opt-out request to review and comply with the request.

Non-Discrimination
We will not discriminate against you for exercising any of your CCPA rights. Unless permitted by the CCPA, we will not:

Deny you goods or services;
Charge you different prices or rates for goods or services, including through granting discounts or other benefits, or imposing penalties;
Provide you a different level or quality of goods or services; or
Suggest that you may receive a different price or rate for goods or services or a different level or quality of goods or services.

Contact Details

If you have any questions about this Privacy Policy, the privacy practices of this site or if you want to exercise any of the rights that you are given under this privacy statement you can contact:

Recordati Rare Diseases Inc.
440 Route 22E
Suite 205
Bridgewater, NJ 08807
908-236-0888

Last Updated: April 14, 2023
See also our Terms of Use Agreement

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