Privacy policy

Last Updated: May 7, 2025

 

This Privacy Policy governs how Recordati Rare Diseases Inc. (“RRD”) uses and discloses information about you collected when you access our websites (including, but not limited to, RecordatiRareDiseases.com/us and cushingsconversations.com)  (together with the websites of all related entities, the “Site”) and the product and product-related services (collectively, “Services”) available through the Site. Please note that some of our websites may have separate privacy policies posted, and in those cases the privacy policy posted on such website will govern. 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 the 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 collect the following categories of personal information when you access or use our Site:

• Identifiers, such as your name, email address, device identifier, or IP address;
• California Customer Records personal information, such as your name and contact information; 
• Protected classification characteristics under California law, such as information about medical conditions;
• Internet or other similar network activity, such as your browsing history and interactions with our Site;
• Geolocation data; and
• Inferences drawn from other personal information.

In addition, we may also collect sensitive personal information concerning your health or the health of your loved one, should you choose to provide such information to us. The types of sensitive personal information we collect include personal information collected and analyzed concerning your health. However, we only collect this information to the extent you voluntarily provide it to us. If you reside in a state that has a consumer health data privacy law,  please also refer to our Consumer Health Data Privacy Policy published on our website, which is incorporated herein by reference. 

 

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 sign up to receive Services or information from us, or when you communicate with us electronically.
• Indirectly from you. For example, from observing your actions on our Site.
• Internet cookies.
• Data analytics providers
• Marketing agencies.

 

For clarity, 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. 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 information, e.g., through a registration or a request for certain materials, we may associate this personal information with information gathered through Cookies. This allows us to offer increased personalization and functionality on the Site.

 

We may also 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 your use of other websites, apps and online resources. You can learn about Google’s practices by going to www.google.com/policies/privacy/partners/.

 

Our Use of Your Personal Information

We use your Personal Information for the following purposes:

• To provide our Services;
• To respond to your inquiries and fulfill your requests;
• To maintain the security of our Site;
• To personalize your experience on our Site by presenting content tailored to you;
• To evaluate and develop new features, technologies, and improvements to our Site and Services;
• For any purpose not otherwise listed herein, with your consent;
• Act as we believe to be necessary or appropriate: (a) under applicable law, such as adverse event reporting; (b) to comply with legal process; (c) to respond to requests from public or government authorities; (d) to enforce our Terms of Use; (e) to protect our operations or those of any of our affiliates; (f) to protect our rights, privacy, safety or property, or that of our affiliates, you or others; (g) at our discretion under emergency circumstances, to notify emergency services or your family members, personal representative or other individuals involved in your care of your location and condition; or (h) to allow us to pursue available remedies or limit the damages that we may sustain.

We may also use aggregate or de-identified data that is not personally identifiable for our own internal purposes.

Our Sharing of Your Personal Information

The California Consumer Privacy Act (CCPA) defines “share” to mean disclosing a consumer’s personal data for cross-context behavioral advertising, also known as tailored advertising. Tailored advertising is when we use information about your use of the Site and Services to tailor ads to be more relevant to you. We may share the following categories of personal information with third parties for cross-context behavioral advertising: 

• Identifiers, such as your name, email address, device identifier, or IP address;
• Internet or other similar network activity, such as your browsing history and interactions with our Site; and
• Inferences drawn from other personal information.

Our Disclosure of Your Personal Information

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

• To contractors if necessary to support our business (e.g., technical support providers);
• To our marketing and advertising partners;
• To protect the personal safety of users of RRD Services, the Site 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 only make these business purpose disclosures under written contracts that describe the purposes, require the recipient to keep the personal information confidential, and prohibit the recipient from using the disclosed information for any purpose except for performing the contract.

 

Personal Information Category	Business Purpose Disclosures	Category of Third-Party Recipients
Identifiers, such as your name, email address, device identifier, or IP address	To provide the requested Services; to improve our Services; for marketing and advertising; to comply with the law	Service providers, advertising partners, marketing partners, government agencies, internet cookie information recipients, affiliates
California Customer Records personal information, such as your name and contact information	To provide the requested Services; to improve our Services; for marketing and advertising; to comply with the law	Service providers, advertising partners, marketing partners, government agencies, internet cookie information recipients, affiliates
Protected classification characteristics under California law, such as information about medical conditions	To provide the requested Services; to improve our Services; for marketing and advertising; to comply with the law	Service providers, advertising partners, marketing partners, government agencies, internet cookie information recipients, affiliates
Internet or other similar network activity, such as your browsing history and interactions with our Site	To provide the requested Services; to improve our Services; for marketing and advertising; to comply with the law	Service providers, advertising partners, marketing partners, government agencies, internet cookie information recipients, affiliates
Geolocation data	To provide the requested Services; to improve our Services; for marketing and advertising; to comply with the law	Service providers, advertising partners, marketing partners, government agencies, internet cookie information recipients, affiliates
Inferences drawn from other personal information	To provide the requested Services; to improve our Services; for marketing and advertising; to comply with the law	Service providers, advertising partners, marketing partners, government agencies, internet cookie information recipients, affiliates
Health-related sensitive personal information	To provide the requested Services; to improve our Services; to comply with the law	Service providers, government agencies, affiliates

We do not sell any personal information as such terms are defined under applicable laws, including, but not limited to, the CCPA.

 

Your Rights and Controls

Certain U.S. states have adopted privacy laws that give certain rights to individuals over their personal information. Depending on the laws of the state in which you live, you may have the following rights:

• The right to know/access.   You may have the right to know and access the specific pieces of data we have collected and retain about you.
• The right to correct.  You may have the right to ask us to correct information you think is inaccurate. You may also have the right to ask us to complete information you think is incomplete. 
• The right to delete.  You may have the right to request we delete the data we maintain about you, subject to certain exceptions, including if we require such personal information in order 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 a legal obligation.
  • Enable solely internal uses that are reasonably aligned with consumer expectations based on your relationship with us.
  • 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 with whom we shared the information.
• The right to data portability.  You may have the right to request that we provide you with a copy of the data we process about you in a digital, portable, and readily usable format.
• The right to opt out of cross-context behavioural advertising.  You may have the right to request that we stop processing your personal information for purposes of cross-context behavioural advertising. 
• The right to opt in/out of our sharing of your personal information.  You may be able to opt in or out of such “sharing”.

 

Because we do not sell personal information, we do not offer users the ability to opt out of such sales. Relative to California residents, to the extent that we collect sensitive personal information about you, we only use and disclose such information for specifically permitted purposes under the CCPA. Accordingly, we do not offer you the ability to limit our uses and disclosures of sensitive personal information. Further, RRD does not engage in “profiling” that utilizes your personal information for automated decision-making that produces legal or similarly significant effects.  So, we do not offer an opt-out for this type of profiling.

 

We will not discriminate against you for exercising any of your rights. 

 

How to Exercise Your Rights:

• The Rights to Know/Access, Correct, Delete, and Data Portability:  You can exercise these rights by:
  • Calling us at 1-877-408-1435
  • 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.

 

• The Rights to Opt In/Out of Sharing/Tailored Advertising:  If you wish to exercise these rights, please 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 sharing. However, you may change your mind and opt back in to personal information sharing at any time by clicking the subscribe links provided to you.

 

Verification of Requestor’s Identity

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. 

 

RRD’s Response Timing and Format

We will confirm receipt of your request within the timeframe required by applicable law, and typically 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 (as permitted by applicable law), 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.

 

External Links

This Site 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 Site and connected to the website of the organization or company that you selected. Even if an affiliation exists between our Site 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 Site 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 Site is intended for use only by U.S. residents and you have indicated that you are a U.S. resident by entering this Site. 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.

   

Contact Details

If you have any questions about this Privacy Policy or the privacy practices of this Site, you can contact:

Recordati Rare Diseases Inc.
440 Route 22E
Suite 205
Bridgewater, NJ 08807
1-877-408-1435

 

See also our Terms of Use Agreement