Personal Data Privacy Policy

Your privacy is important to us. We, Citrin Foundation (the "Foundation", "we", "us" or "our") are committed to protect the personal data provided by you in accordance with the principles set out in this Personal Data Privacy Policy ("Data Privacy Policy" or "Policy"). As the context may require, "you" or "your" may include you and/or your spouse, children, parents, dependents, patients and/or third parties for and on whose behalf you are duly authorized to provide us with their personal data.

Please take a moment to read this Policy. This Policy sets out how we may collect, use, disclose and manage your personal data. 

By accessing our website (https://www.citrinfoundation.org), interacting with us, submitting information to us, signing up for or using any services (or products) offered by us, you agree and consent to us collecting, using, disclosing and managing your personal data (including disclosing such personal data to our authorized service providers and relevant third parties) in accordance with this Policy.

If you are below the age of 16 years, you represent and warrant that you have secured the consent of your parent/guardian for interacting with us, submitting information to us, signing up for any services (or products) offered by us, and for us to collect, use, disclose and manage your personal data (including disclosing such personal data to our authorized service providers) in accordance with this Policy. 

This Policy supplements but does not supersede nor replace any other consents you may have previously provided to us in respect of your personal data, and your consents herein are additional to any rights which we may have at law to collect, use, disclose and manage your personal data.

Unless defined in this Policy, any terms used in this Policy which are also defined in Personal Data Protection Act 2012 of Singapore ("PDPA") shall have the definition as provided by PDPA or Advisory Guidelines promulgated by Personal Data Protection Commission ("PDPC"). We may update this Policy from time to time to ensure that it remains consistent with applicable laws and guidelines. Subject to your rights at law, you agree to be bound by the prevailing terms of this Policy as updated from time to time on our website. The latest version of this Policy supersedes earlier versions. We encourage you to review this page periodically to keep up to date with any changes to this Policy.

1. PERSONAL DATA

In this Policy, "personal data" refers to any data, whether true or not, about an individual who can be identified (i) from that data or (ii) from that data and other information to which we have or are likely to have access, including data in our records as may be updated from time to time. Examples of such personal data may include your full name, identification number, passport, photograph, video, personal telephone number (including mobile number), personal email address, thumbprint, DNA profile, mailing address, and any of such foregoing information relating to any individuals that you may provide us with in any form.

Personal data does not apply to:

a. business contact information, such as an individual’s business position or title, business telephone number, business address, business electronic mail address, business fax number and any other similar information not provided solely for the individual’s personal purposes; 

b. personal data that is anonymized, i.e. identifying information is removed such that the remaining data does not identify any particular individual or the possibility of re-identification is trivial; 

c. personal data of a deceased individual who has been dead for more than 10 years; and

d. personal data that is falsified with the intent to commit fraudulent.

2. PURPOSE FOR COLLECTION, USE AND DISCLOSURE OF YOUR PERSONAL DATA

As a non-profit organization that tackles citrin deficiency, we collect, use, disclose and manage personal data you provide us with so that we are able to: 

a. verify your identity;

b. contact, communicate and interact with you;

c. introduce you to our organization, work and events;

d. provide you with such information, updates, resources, support and help as we could in relation to citrin deficiency;

e. respond to, process and handle your queries, feedback, complaints and requests;

f. organize events, seminars, meetings, tours, interviews, media campaigns and/or publications;

g. comply with applicable rules, laws, regulations, codes of practice, guidelines, orders issued by any judicial, governmental, supervisory or regulatory bodies;

h. respond to regulatory complaints, investigations, audit checks, due diligence and such other orders by any judicial, governmental, supervisory or regulatory bodies;

i. initiate, respond to and otherwise conduct any legal and regulatory claims, suits, arbitrations, court actions, investigations and/or other proceedings; and

j. take such actions as are necessary, desirable or relevant to the purposes reasonably related to the aforesaid.

In addition, if you submit a research proposal to us and/or otherwise apply for our funding, we collect, use, disclose and manage personal data you provide us with so that we are able to:

k. conduct interviews, background screening and due diligence;

l. process your application;

m. obtain references;

n. assess the suitability of your proposal and/or application;

o. draft, review, negotiate, sign and perform agreements or other legal documents in respect of the proposed research and/or funding;

p. plan, facilitate, manage, administer, perform and/or close the research and/or funding; and

q. take such actions as are necessary, desirable or relevant to the purposes reasonably related to the aforementioned.

3. COLLECTION OF PERSONAL DATA

In general, we may collect personal data in the following ways:

a. when you access our website;

b. when you communicate and interact with us, including all verbal and written communications like telephone calls, emails, submissions through our website, letters, face-to-face interactions, social media platforms and other forms of communications;

c. when you submit any form, including but not limited to online surveys and inquiry forms;

d. when you request that we contact you or that you be included in an invitation, email or other mailing list; and 

e. when you respond to our initiatives or to any request for additional personal data;

If you provide us with personal data relating to a third party (e.g., your spouse, children, parents, dependents, patients and/or other individuals who have duly authorized you), you represent and warrant that the third party has given consent for the collection, use, disclosure and management of his/her personal data for the purposes for which such data is provided.

4. ANONYMITY

To the extent possible and practicable, we may anonymize your personal data in our possession so that we will no longer retain your personal data under PDPA, i.e., when the identifying information is removed such that the remaining data does not identify any particular individual or the possibility of re-identification is trivial. 

5. PROTECTION OF PERSONAL DATA

We take reasonable steps (including anonymization so long as it is lawful and practicable, as mentioned above) to ensure the security of personal data in our possession and to protect it against loss, misuse or unauthorized access, destruction, use, modification or disclosure. 

Only authorized personnel are permitted to access personal data in our possession. 

While we take reasonable efforts to protect personal data in our possession, we cannot be held liable for unauthorized and unintended access beyond our control.

6. DISCLOSURE OF PERSONAL DATA

Subject to compliance with PDPA, we may disclose your personal data strictly for the purposes listed above only (as applicable) to the following entities or parties, whether located in Singapore or overseas:

a. authorized personnel of our organization;

b. external vendors, third party service providers, agents and contractors who provide operational services to us, including but not limited to courier services, information technology (including but not limited to hosting, storing and processing of data), event organization;

c. our professional advisers such as lawyers and auditors in relation to the administration, operation and management of our organization and work;

d. judicial, governmental, supervisory or regulatory bodies; and

e. any other party to whom you have authorized us to disclose your personal data to.

We will not disclose or transfer your personal data to an external party in contravention of PDPA.

7. RETENTION OF PERSONAL DATA

We will not retain your personal data longer than necessary for the purposes for which it has been collected, unless there are legitimate reasons for such retention. We will not retain your personal data "just in case" it may be needed for other purposes that you have not consented to.

Subject to the aforementioned, we will securely dispose of or anonymize personal data that we can reasonably determine is no longer needed.

8. TRANSFER OF PERSONAL DATA OUT OF SINGAPORE

If we transfer your personal data to a country outside of Singapore, we will ensure that the receiving organization is legally bound to provide protection comparable to the standard under PDPA. 

9. WITHDRAWAL OF CONSENT, ACCESS AND CORRECTION OF PERSONAL DATA

If you (i) have any questions or feedback relating to your personal data or this Policy; (ii) would like to access and/or make corrections to your personal data in our possession or (iii) would like to withdraw your consent from any (or all) of the purposes listed in this Policy, please contact us at: 

Data Protection Officer
Citrin Foundation
6 Temasek Boulevard
#38-05 Suntec Tower Four
Singapore 038986
Email: pdpa@citrinfoundation.org

We will ask you to provide some form of identification to ensure that you are the person to whom the information relates. We may also request further information from you about your request and the reasons behind it. 

Occasionally, we may need to refuse your request to access information, if such access (but not restricted to):

a. threatens or is likely to threaten the safety or physical or mental health of another individual;

b. causes or is likely to cause immediate or grave harm to the safety or physical or mental health of the individual who has made the request;

c. reveals or is likely to reveal personal data about another individual, or the identity of an individual who provided personal data about another individual; and

d. is contrary to public and/or national interest.

In your notice to withdraw your consent, please specify any (or all) of the purposes in this Policy from which you intend to withdraw your consent. Within a reasonable notice period (not less than ten (10) business days) after receipt of your withdrawal notice, we will cease, and will cause our agents and authorized personnel (including data intermediaries and vendors) to cease such collection, use and disclosure of your personal data for the purpose(s) indicated in your notice. Depending on the nature of the withdrawal, we may no longer be in a position to continue to provide our services or products to you, or perform any contractual obligations in place, which in turn may result in the termination of any agreements with us, and your being in breach of your contractual obligations or undertakings. All our rights and remedies in such event are hereby expressly reserved.

10. THIRD PARTY WEBSITES

Our website may contain links to third party websites. This Policy does not apply to such third party websites.

Third party websites may also contain links to our website. This Policy also does not apply to such external links.

The operators of third party websites may collect your personal data. We urge you to read and understand the privacy policies of such third party websites.

11. GOVERNING LAW, JURISDICTION

The laws of Singapore shall govern, construe and enforce all of the rights and duties of the parties arising from or relating in any way to the subject matter of this Policy, without regard to its conflict of laws rules. All parties agree to submit to the exclusive jurisdiction of the courts of Singapore.

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Citrin Foundation

Citrin Foundation, set up in 2016 to tackle citrin deficiency, aims to provide end-to-end support to all citrin deficiency patients, from funding research that drives effective treatments and eventually cure, and provide support to patients and families. We are a patient-driven, not-for profit organization.

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