Privacy Policy

FD/MAS Alliance Privacy Policy

Last Updated: August 9, 2021

Introduction

Welcome to the FD/MAS Alliance.

This Privacy Policy supplements the Terms of Service, available here (the “ToS”).  Any capitalized terms used, but not defined, in this Privacy Policy refer to the corresponding definitions in the ToS.

Please read this Privacy Policy carefully.  It sets forth the what, when, how and why of the collection and processing of your personal information by the Fibrous Dysplasia Foundation Inc. (“FDF,” “we,” “us,” “our”) in connection with your visit to, and use of, the Site (as defined in the ToS) and the services therein (collectively with the Site, the “Service”).  Please note that the FD/MAS Patient Registry website is subject to a separate privacy policy.

If you have any questions about this Privacy Policy or how we collect and use your personal information, please contact us at info@fibrousdysplasia.org.

If you do not agree to the collection and processing of your personal information in the manner stated in this Privacy Policy, please do not provide your information and stop using the Service.  By using the Service, you are acknowledging the terms and conditions herein.  

(1) Personal information that we collect and how we use it

When you use the Service, we collect certain personal information.  We summarize below (i) the types of personal information we collect, (ii) how that personal information is used by us and, (iii) if you are in the European Economic Area, Switzerland, the United Kingdom, Thailand, Brazil or Turkey (the “Relevant Jurisdictions”), or other jurisdiction that requires us to state a legal basis for the processing of your data, the legal basis under which we process your data.  By acknowledging this Privacy Policy, you hereby consent to the collection and processing of personal information as set forth below.

Personal Information

Use

Legal Basis (If Applicable)

Newsletter Data – If you sign up for our newsletter, we will collect your e-mail address.

We will send our newsletters to your e-mail address. 

We collect and use this information with consent.

Physician Data – Patients and medical professionals may nominate physicians with experience treating fibrous dysplasia and McCune-Albright Syndrome for inclusion in our physician database by providing us the physician’s name, address and e-mail address. 

This data is made publicly available in our physician database.

We collect and use this information with consent.

Nominator Data – If a patient or medical professional nominates a physician for inclusion in our physician database, we collect the nominator’s name, address, e-mail address and phone number.

We use this data internally to track and log physician nominations.

We collect and use this information with consent.

Donor Data – If you donate to the FD/MAS Alliance, we will collect your name, payment information (e.g., bank account or credit card), address, phone number and e-mail address.

We use this data to process and collect your donations and send you information regarding the FD/MAS Alliance, including our newsletters.

We collect and use this information with consent.

Website Traffic Data – When you browse the Site we collect view history, visit duration, page views and information regarding your device and browser.

We analyze this data to understand how the Service is being used to improve it.

We have a legitimate interest in understanding how the Service is being used to make improvements.

We do not sell, trade, or rent your personal information.

(2) Where your personal information is stored and accessed

Your personal information will be stored and processed on our servers and/or servers hosted by third party service providers on our behalf.  These servers may not be located in the country you are located and your information may be accessed and processed by individuals outside of the country you are located in.  By using the Service, you hereby consent to the transfer of your personal information outside your country.

The following third party service providers host servers and/or process personal information on our behalf:

  • Google – We use Google Analytics to analyze and generate reports regarding website traffic.
  • Site Ground – The Site is hosted by Site Ground.

(3) How we share your personal information

If necessary, we will share your personal information with third parties.  Situations where this occur include the following:

  • Third party service providers that provide us services in support of the Service (e.g., our website developers) may need access to your personal information to provide us those services.
  • There are circumstances in which we are legally required to disclose information about you to authorities, such as to comply with a legal obligation, enforce our terms, address issues relating to security or fraud, or protect our users. These disclosures may be made with or without your consent, and with or without notice, in compliance with the terms of a valid legal process such as a subpoena, court order, or search warrant. We are usually prohibited from notifying you of any such disclosures by the terms of the legal process. We may also seek your consent to disclose information in response to a governmental entity’s request. We may also disclose your information to:
  • enforce the ToS and other agreements, including investigation of any potential violation thereof;
  • detect, prevent or otherwise address security, fraud or technical issues; or
  • protect the rights, property or safety of us, our users, a third party or the public as required or permitted by law.
  • We may also disclose your information to third parties if we either: (a) sell, transfer, merge, consolidate or re-organize any part(s) of our operations, or merge with, acquire or form a joint venture with, any other entity, in which case we may disclose your data to any prospective buyer, new owner, or other third party involved in such change to our operations; or (b) sell or transfer any of our assets, in which case the information we hold about you may be sold as part of those assets and may be transferred to any prospective buyer, new owner, or other third party involved in such sale or transfer.

(4) Cookies

Cookies are small text files that are stored on your computer or device when you visit a certain web address and are refreshed on each visit.  Cookies are sent back to the originating web address on each subsequent visit, or to another web address that recognizes that cookie. Cookies are used in order to make the Service work, or to work more efficiently, as well as to provide information to our team regarding the Service.

We use cookies to:

  • facilitate the Service’s registration and login functions;
  • track users’ interactions with the Service, including to track the general traffic flow on the Site, whether our email communications have been viewed, and other statistical data; and
  • save users’ preferences.

We use web beacons, pixel tags, and other tracking technologies when providing you the Service, including in our newsletters and email communications.  A “web beacon” or “pixel tag” is tiny object or image embedded in a web page or email. They are used to track the number of users who have visited particular pages and viewed emails, and acquire other statistical data. They collect only a limited set of data, such as a cookie number, time and date of page or email view, and a description of the page or email on which they reside.

You have the right to choose whether or not to accept cookies.  When you visit the Site for the first time, it will present you with an information bar where you can choose to accept or reject the placement of cookies and sharing of cookies information.  Additionally, you can change your cookies preferences for the Site at any time here.

If you have disabled one or more cookies, we may still use information collected from cookies prior to your disabled preference being set, but we will stop using the disabled cookie to collect any further information.

Most browsers are initially set to accept cookies, but a user may be able to change a browser’s settings to refuse cookies or to be alerted when cookies are being sent.

(5) Underage users

Child” means any user under 18 years of age or, in the case such user is in a jurisdiction where the minimum age for processing personal information is different from 18 years of age, such different age.

If you are a Child, you must not use the Service for any purpose, except where your parent or legal guardian has provided us consent for you to use the Service.

We do not knowingly collect personal information from any Child without the express written consent of the Child’s parent or legal guardian. If you believe we have collected personal information of any Child, or are the parent or legal guardian of a Child and desire to withdraw your consent to the collection of personal information of such Child, please contact us immediately at info@fibrousdysplasia.org.

(6) Data Retention

We do not keep your data for longer than is necessary unless we are required to do so under law.  Google Analytics data is retained for 26 months.  If you wish for your personal information to be deleted, please contact us at info@fibrousdysplasia.org.

(7) Data security

We are committed to maintaining the privacy and integrity of your personal information no matter where it is stored. We restrict access to personal information to select employees and consultants as needed to provide the Service and to select third parties, as described in Section (3).

We also protect data through the use of technological protection measures such as encryption, malicious attack prevention software and intrusion detection and prevention software.

However, the transmission of information via the internet cannot be guaranteed to be completely secure. Although we will implement and maintain reasonable measures to protect your personal information, we cannot guarantee the security of the information transmitted through the Service or otherwise via the Internet; any transmission is at your own risk.

(8) Rights of users in certain jurisdictions

You have certain rights in relation to the personal information we hold about you, depending on where you are located.  Some of these only apply in certain circumstances.

If you are a user in a Relevant Jurisdiction, all of the sub-sections below apply to you.

If you are a user in Canada, Argentina, India or Russia, the sub-sections entitled “Access”, “Correction”, and “Erasure” apply to you.

If you are a user in Mexico, the sub-sections entitled “Access,” “Correction,” “Erasure,” “Restriction of processing to storage only,” and “Objection” apply to you.

If you are a user in Australia or New Zealand, the sub-sections entitled “Access” and “Correction” apply to you.

Data protection laws and regulations may change from time to time, and such changes may affect the applicability of these terms to you or may impose additional terms with respect to the collection and processing of your personal information.

Please also review the “Jurisdiction-Specific Supplemental Terms” at the end of this Privacy Policy if you are in one of the jurisdictions listed in that section.

(a) Access

You have the right to access personal information we hold about you, how we use it, and who we share it with. You can request this information by contacting us at info@fibrousdysplasia.org.

(b) Portability

You have the right to receive a copy of certain personal information we process about you. This comprises any personal information we process on the basis of your consent or pursuant to our contract with you, as described in Section (1). You have the right to receive this information in a structured, commonly used and machine-readable format. You also have the right to request that we transfer that personal information to another party, with certain exceptions. We will provide further information to you about this if you make such a request.

If you wish for us to transfer such personal information to a third party, please ensure you detail that party in your request. Note that we can only do so where it is technically feasible. Please note that we may not be able to provide you with personal information if providing it would interfere with another’s rights (for example, where providing the personal information we hold about you would reveal information about another person or our trade secrets or intellectual property).

You can make a request by contacting us at info@fibrousdysplasia.org.

(c) Correction

You have the right to correct any of your personal information we hold that is inaccurate. If you believe we hold any personal information about you and that information is inaccurate, please contact us at info@fibrousdysplasia.org.

(d) Erasure

You can request that we delete your account and your personal information in our possession by contacting us at info@fibrousdysplasia.org.

We may need to retain personal information if there are valid grounds under data protection laws for us to do so (for example, for the defense of legal claims or freedom of expression) but we will let you know if that is the case.

(e) Restriction of processing to storage only

You have a right to require us to stop processing the personal information we hold about you other than for storage purposes in certain circumstances. Please note, however, that if we stop processing your personal information, we may use it again if there are valid grounds under data protection laws for us to do so (for example, for the defense of legal claims or for another’s protection).

(f) Objection

You have the right to object to our processing of your personal information. We will consider your request in other circumstances as detailed below by contacting us at info@fibrousdysplasia.org.

To the extent provided by applicable laws and regulations, you may withdraw any consent you previously provided to us for certain processing activities by contacting us at info@fibrousdysplasia.org. Where consent is required to process your personal information, if you do not consent to the processing or if you withdraw your consent we may not be able to deliver the Service. 

(9) Announcements

We may from time to time send you announcements when we consider it necessary to do so (for example, when we temporarily suspend access to the Service for maintenance, or security, privacy or administrative-related communications). You may not opt-out of these service-related announcements, which are not promotional in nature.

(10) Complaints to a Supervisory Authority

You have the right to submit complaints to an applicable supervisory authority.  For your reference, a list of data protection authorities is available here.

(11) Exercising your rights 

We will respond to your requests without undue delay and at least within one month (though this may be extended by a further two months in certain circumstances). To exercise any of your rights, please contact us at info@fibrousdysplasia.org.  To exercise any of these rights, with the exception of the right to complain to a supervisory authority (in which case, please contact the supervisory authority), please email info@fibrousdysplasia.org.  Our physical mailing address is 2885 Sanford Ave SW #40754 Grandville, MI 49418, United States of America.

(12) Questions, comments and complaints

Questions and comments regarding this Privacy Policy are welcomed and should be addressed to info@fibrousdysplasia.org.

In the event that you wish to make a complaint about how we process your personal information, please contact us in the first instance at info@fibrousdysplasia.org and we will endeavor to deal with your request as soon as possible. This is without prejudice to your right to launch a claim with the data protection authority in the country in which you live or work where you think we have infringed data protection laws.  

(13) Changes

We may change or update this Privacy Policy from time to time.  Any changes or updates will be posted here, so please check back regularly to review the current version.  If you continue using the Service, you assent to such changes or updates.

*    *    *

Jurisdiction-Specific Supplemental Terms

Under the laws of certain jurisdictions, additional terms apply to users of the Service.  We summarize below the terms that apply to users in certain jurisdictions as of the date of this Privacy Policy.  Data protection laws and regulations may change from time to time, and such changes may affect the applicability of these terms to you or may impose additional terms with respect to the collection and processing of your personal information.

Algeria

By using the Service, you give us your consent for the collection, storage, treatment and use of your personal information, and transfer of your personal information to a third party located outside Algeria (e.g., to our third party service providers) as described in this Privacy Policy.

Australia

Overseas recipients 

We take reasonable steps to ensure that third party recipients of your personal information located outside Australia handle your personal information in a manner that is consistent with Australian privacy laws. However, you acknowledge that we do not control, or accept liability for, the acts and omissions of these third party recipients.

Children

If you are under the age of 18, you undertake that you have the consent of your parent or legal guardian to register an account on and use the Service.

Transacting anonymously

Where practicable, we will give you the option of not identifying yourself or using a pseudonym when registering an account on or using the Service. You acknowledge that if you do not provide us with your personal information, we may be unable to provide you with access to certain features or sections of the Service.

Your rights

If you are dissatisfied with our response to your request for access to, or correction of, your personal information or your privacy complaint in respect of your personal information, you may contact the Office of the Australian Information Commissioner (Telephone +61 1300 363 992 or email enquiries@oaic.gov.au).

Data transfers

While we take reasonable steps to ensure that third party recipients of your personal information comply with privacy laws that are similar to those of your jurisdiction, you acknowledge and agree that we cannot control the actions of third party recipients and so cannot guarantee that they will comply with those privacy laws.

Bangladesh

Agreement

By accepting this Privacy Policy, you (i) expressly state that you authorize us to collect, use, store, and process your personal information, including, disclosing to third parties, to the extent provided by this Privacy Policy and (ii) consent to the cross-border transfer of your information in accordance with Section (2) of this Privacy Policy.

Age restriction

In order to use the Service, you represent that you are at least 18 years old and, therefore, legally capable of entering into binding contracts.

Brazil

This section applies to users located in Brazil:

Consent revocation 

Whenever we use your personal information based on your consent, you may revoke consent that you have previously given for the collection, use and disclosure of your personal information, subject to contractual or legal limitations. To revoke such consent, you may contact us at info@fibrousdysplasia.org. This may affect our provision of the Service to you.

Parental and guardian consent

If you are under the age of 18 years, you should not use the Service for any purpose without first obtaining parental/guardian agreement to this Privacy Policy (both for themselves and on your behalf). We do not knowingly collect personal information from any children under the age of 18 years without such consent. Please contact us at info@fibrousdysplasia.org if you believe we have any personal information from any children under the age of 18 years without such parental/guardian consent – we will promptly investigate (and remove) such personal information.

BY ACCEPTING THIS PRIVACY POLICY, YOU EXPRESSLY STATE THAT YOU AUTHORIZE US TO COLLECT, USE, STORE, AND PROCESS YOUR PERSONAL INFORMATION, INCLUDING, DISCLOSING TO THIRD PARTIES, TO THE EXTENT PROVIDED BY THIS PRIVACY POLICY.

Canada 

If you are located in Canada and wish to obtain written information about our policies and practices with respect to our service providers located outside Canada, you may contact us at info@fibrousdysplasia.org.  Our privacy representatives who monitor this email address are also able to answer any questions users may have about the collection, use, disclosure or storage of personal information by our service providers.

Where we use service providers who might have access to your personal information, we require them to have privacy and security standards that are comparable to ours. We use contracts and other measures with our service providers to maintain the confidentiality and security of your personal information and to prevent it from being used for any purpose other than as provided in this Privacy Policy.

Egypt

You acknowledge that you have read, understood, and consented to this Privacy Policy. If you do not consent to this Privacy Policy, you must not use the Service.

You are acknowledging your consent to the processing, storage, and cross-border transfer of your personal data. The cross border transfer may occur outside Egypt, as described in Section (2) of this Privacy Policy.

If you are a new user, you have seven (7) days to inform us of any objection you may have to this Privacy Policy.

As an Egyptian data subject, you have certain rights under the Egyptian Personal Data Protection Law.

France

You have the right to provide us with general or specific instructions for the retention, deletion, and communication of your personal data after your death.

The specific instructions are only valid for the processing activities mentioned therein and the processing of these instructions is subject to your specific consent.

You may amend or revoke your instructions at any time.

You may designate a person responsible for the implementation of your instructions. This person will be informed of your instructions, in the event of your death, and be entitled to request their implementation from us. In the absence of designation or, unless otherwise provided for, in the event of the death of the designated person, their heirs will have the right to be informed of your instructions and to request their implementation from us.

When you wish to make such instructions, please contact us at info@fibrousdysplasia.org.

Hong Kong 

As a Hong Kong data subject you have legal rights in relation to the personal information we hold about you (to the extent permitted under applicable laws and regulations).

You are entitled to make a subject access request to receive a copy of the data we process about you, a data correction request as well as a right to reject to the use of your personal data for direct marketing purposes.

India

Sensitive Personal Information

Your “Sensitive Personal Information” shall mean passwords, financial information such as bank account or credit card or debit card or other payment instrument details, biometric data, physical or mental health, sex life or sexual orientation, and/ or medical records or history, and similar information, but does not include information available in the public domain, or provided under Indian laws, including the Right to Information Act, 2005.

Sharing of your Sensitive Personal Information

Where we permit any third parties to collect and use your Sensitive Personal Information, we shall take reasonable measures to ensure that the third parties do not further disclose the Sensitive Personal Information.

Age restrictions

Children under the age of 18 are not allowed to execute online contracts with us or sign up for our services. Parental consent is required for children under the age of 18 years to avail the Service.

Withdrawal of consent 

To the extent provided by applicable laws and regulations, you may withdraw any consent you previously provided to us for certain processing activities by contacting us at info@fibrousdysplasia.org. Where consent is required to process your personal information, if you do not consent to the processing or if you withdraw your consent we may not be able to deliver the expected service.

Indonesia 

Consent

By accepting and consenting to this Privacy Policy, you agree that we may collect, use and share your personal information in accordance with this Privacy Policy, as revised from time to time.  If you do not agree to this Privacy Policy, you must not access or use our services and we have the right to not provide you with access to our services.

Parental and guardian consent

If you are under the age of 21, you undertake that you have the consent of your parent or legal guardian to register an account on and use the Service.

Data subject rights

You have the right to access your personal information stored in our Service from time to time in accordance with applicable data privacy laws and regulations in Indonesia.

Data breach

In the event we fail to maintain the confidentiality of your personal information, to the extent required by local laws and regulations, we will notify you through the contact information provided by you or via the Service within fourteen (14) days.

Data retention

We will retain your personal information in line with legal requirements.

Notification to amendment of this Privacy Policy

In the event we amend this Privacy Policy, we will provide a notification to you regarding the effective date of the changes at the latest fourteen (14) days prior to the effective date, through (i) a notice to be posted on the landing page of our website, pop-up notification, or the splash screen of our mobile app or (ii) the contact information you provided to us. If you fail to explicitly express your objection to the amended Privacy Policy within the above notification period, you will be considered as accepting the changes and agreed to the new privacy policy. However, you may stop using or accessing the Service if you cease to agree with the amended Privacy Policy and you may contact us at info@fibrousdysplasia.org to delete your account.

Data accuracy and third party consent

You are responsible for making sure that any personal details which you provide to us are accurate and current. In order to confirm the accuracy of the information, we may also verify the information provided to us, at any time. You hereby represent that you have secured all necessary consent(s) before providing us with any other person’s personal information, in which case we will always assume that you have already obtained prior consent, and as such, you will be responsible for any claims whatsoever from any party arising as a result of the absence of such consent(s).

Japan

Consent

By clicking “Register” or “Accept”, you consent to the cross-border transfer of your information in accordance with Section (2) of this Privacy Policy.

Your rights 

You may request us to notify you about the purpose of use of your personal information, to make any correction to your personal information, to discontinue the use or provision of your personal information, and/or to delete your personal information that is stored with us, to the extent provided by the Act on the Protection of Personal Information of Japan. When you wish to make such requests, please contact us at info@fibrousdysplasia.org.

Kingdom of Saudi Arabia 

You consent to the collection, use, disclosure, export and storage of your Personal Information as described in this Privacy Policy.

Kuwait

You represent that you are at least 21 years old, or 18 years old and have obtained parental/guardian consent and, therefore, legally capable of contracting under the applicable laws and regulations in Kuwait.

By accepting this Privacy Policy, you expressly state that you authorize us to collect, use, store, and process your personal data and to disclose this data to third parties whether inside or outside of Kuwait, in line with the provisions of this Privacy Policy.

Malaysia

Parental and guardian consent

If you are under the age of 18 years, please do not use the Service.

In the event you are agreeing to this Privacy Policy in order for a minor to access and use the Service, you hereby consent to the provision of personal information of the minor to be processed in accordance with this Privacy Policy and you personally accept and agree to be bound by the terms in this Privacy Policy. Further, you hereby agree to take responsibility for the actions of such minor, and that minor’s compliance with this Privacy Policy.

Rights of data subjects

Right of access: You have the right to request access to and obtain a copy of your personal information that we have collected and is being processed by or on behalf of us. We reserve the right to impose a fee for providing access to your personal information in the amounts as permitted under law.

When handling a data access request, we are permitted to request for certain information to verify the identity of the requester to ensure that he/she is the person legally entitled to make the data access request.

Right of correction: You may request for the correction of your personal information. When handling a data correction request, we are permitted to request for certain information to verify the identity of the requester to ensure that he/she is the person legally entitled to make the data correction request.

Right to limit processing of your personal information: You may request to limit the processing of your personal information by using the contact details provided above. However this may affect our provision of the Service to you.

Contact

To protect your personal information and handle complaints relating to your personal information, please contact us at info@fibrousdysplasia.org.

Mexico

Purposes of processing

See Section (1) of this Privacy Policy.

Data transfer consent

We require your consent to carry out transfers of data, which are detailed in Section (3).

By using the Service and providing us with your personal data, you agree to the data transfers detailed above that require your consent.

Age restrictions

You won’t be able to use the Service unless you are 18 years old or older, or you have obtained parental/guardian agreement to this Privacy Policy (both for themselves and on your behalf).

Your rights

You also have the right to revoke the consent that you have provided us to process your personal data.

To exercise any of your rights, contact us at info@fibrousdysplasia.org.

To know more about your rights, as well as the applicable means, procedures and requirements to exercise any of your rights, please contact us at info@fibrousdysplasia.org.

Morocco

The protection of your privacy is an important principle for us. We collect information for purposes strictly necessary for the proper use of the Service.

By accepting these conditions of use, you explicitly accept that your personal data may be subject to processing by the Service.

Kindly note:

    • the identity of the Data Controller is FDF, email: info@fibrousdysplasia.org;
    • the purposes of the processing for which the data are intended are set out in the table in Section (1);
    • recipients or categories of recipients are set out in Section (3); and
  • and Section (1) indicates whether information we gather is compulsory or optional and the possible consequences of a lack of an answer. 

New Zealand

This section applies to users located in New Zealand:

Overseas recipients 

We take reasonable steps to ensure that third party recipients of your personal information located outside New Zealand handle your personal information in a manner that is consistent with New Zealand privacy laws. However, you acknowledge that we do not control, or accept liability for, the acts and omissions of these third party recipients.

Children

If you are under the age of 16, you undertake that you have the consent of your parent or legal guardian to register an account on and use the Service.

Your rights

If you are dissatisfied with our response to your request for access to, or correction of, your personal information or your privacy complaint in respect of your personal information, you may contact the Office of the New Zealand Privacy Commissioner (www.privacy.org.nz).

Data transfers

While we take reasonable steps to ensure that third party recipients of your personal information comply with privacy laws that are similar to those of your jurisdiction, you acknowledge and agree that we cannot control the actions of third party recipients and so cannot guarantee that they will comply with those privacy laws.

Peru

You may exercise rights related to the protection of personal information by requesting access to your personal information or the correction, deletion or suspension of processing of your personal information, etc. pursuant to applicable laws such as the Personal Data Protection Law (the “Law”).

You may also exercise these rights through your legal guardian or someone who has been authorized by you to exercise the right. However, in this case, you must submit a power of attorney to us in accordance with the Law.

Upon your request, we will take necessary measures without delay in accordance with applicable laws such as the Law.

You can also withdraw your consent or demand a suspension of the personal information processing at any time.

If you consider that your request has not been met you may file a claim with the Peruvian National Authority of Personal Data Protection.

Contact

Please contact us at info@fibrousdysplasia.org.

Philippines

Minimum Age

You must be at least 18 years of age to be able to use the Service.

Changes

We will not implement any material changes to the way we process your personal information, as described in the Privacy Policy, unless we have notified you and have obtained your consent to such material changes.

Your rights

You are entitled to the following rights, to the extent provided by applicable laws:

  • Right to be informed. You have the right to be informed whether personal data pertaining to you shall be, is being, or have been processed, including the existence of automated decision-making and profiling.
  • Right to object. You shall have the right to object to the processing of your personal information, including processing for direct marketing, automated processing or profiling. When you object or withhold consent, we shall no longer process your personal data, unless the personal data is needed pursuant to a subpoena; the collection and processing are for obvious purposes, including, when it is necessary for the performance of or in relation to a contract or service to which you have bound yourself; or your personal information is being collected and processed as a result of a legal obligation.
  • Right to access. You have the right to reasonable access to, upon demand, the following:
  • contents of your personal information that were processed;
  • sources from which your personal information were obtained;
  • names and addresses of recipients of your personal information;
  • manner by which such data were processed;
  • reasons for the disclosure of the personal data to recipients, if any;
  • information on automated processes where the data will, or is likely to, be made as the sole basis for any decision that significantly affects or will affect the data subject;
  • date when the personal information concerning you were last accessed and modified; and
  • the designation, name or identity, and address of the personal information controller.
  • Right to rectification. You have the right to dispute the inaccuracy or error in the personal information and have us correct it immediately and accordingly, unless the request is vexatious or otherwise unreasonable. If the personal information has been corrected, we shall ensure the accessibility of both the new and the retracted information and the simultaneous receipt of the new and the retracted information by the intended recipients thereof, provided that recipients or third parties who have previously received such processed personal data shall be informed of its inaccuracy and its rectification, upon your reasonable request.
  • Right to erasure or blocking. You shall have the right to suspend, withdraw or order the blocking, removal or destruction of your personal information from our filing system.

This right may be exercised upon your discovery and substantial proof of any of the following:

  • your personal data is incomplete, outdated, false, or unlawfully obtained;
  • your personal data is being used for purpose not authorized by you;
  • your personal data is no longer necessary for the purposes for which they were collected;
  • you withdraw consent or object to the processing, and there is no other legal ground or overriding legitimate interest for the processing;
  • your personal data concerns private information that is prejudicial to you, unless justified by freedom of speech, of expression, or of the press or otherwise authorized;
  • the processing is unlawful;
  • we violated your rights.

Consent

By consenting to this Privacy Policy, you consent to us:

    • collecting and processing your personal information as described in Section (1);
    • transferring or storing your personal information in destinations outside the Philippines as described in Section (2);
  • sharing your personal information with third parties as described in Section (3). 

Qatar

If you are using the Service in Qatar, you consent (for the purposes of Law No. 13 of 2016 on the Protection of Personal Data as may amended from time to time) to the processing of your information in accordance with this Privacy Policy.

Republic of Korea

Delegation of processing 

For the performance of the Service, we delegate the processing of your personal information to the following professional service providers.

Service Provider

Descriptions of Delegated Services

Google

We use Google Analytics to analyze website traffic data and generate usage reports.

Site Ground

The Site is hosted by Site Ground

Overseas transfers

We transfer your personal information outside South Korea, as described in Section (2) of this Privacy Policy.

Data destruction

Personal information, which has fulfilled the purpose for which it was collected or used, and has reached the period of time during which personal information was to be possessed, will be destroyed in an irreversible way. Personal information stored in electronic files will be deleted safely in an irreversible way by using technical methods, and printed information will be destroyed by shredding or incinerating such information.

Your rights 

You may exercise rights related to the protection of personal information by requesting access to your personal information or the correction, deletion or suspension of processing of your personal information, etc. pursuant to applicable laws such as the Personal Information Protection Act (“PIPA”).

You may also exercise these rights through your legal guardian or someone who has been authorized by you to exercise the right. However, in this case, you must submit a power of attorney to us in accordance with the Enforcement Regulations of the PIPA.

Upon your request, we will take necessary measures without delay in accordance with applicable laws such as the PIPA.

You can also withdraw your consent or demand a suspension of the personal information processing at any time.

Russia

If you are using the Service in Russia, by using the Service:

  • you consent (for the purposes of the Russian Federal Law No. 152-FZ dated 27 July 2006 “On Personal Data” (as amended) or any replacement regulations) to the processing in accordance with this Privacy Policy of your information; if legitimate interests, optimization of the Service or carrying out of the contract are mentioned herein, you agree that, for the purposes of Russian law, the consent so provided can be considered an additional ground for processing (meaning that the processing is conducted with your consent); this consent also covers the processing of any cookies (to the extent that those qualify as personal data under Russian law);
  • you consent to the cross-border transfer of your information in accordance with Section (2) of this Privacy Policy;
  • you consent (for the purposes of Article 152.1 of the Russian Civil Code) with the processing of your image in accordance with this Privacy Policy; and
  • you consent, for the purposes of Federal Law “On Marketing/Advertising” that we may share advertising/marketing communications with you, unless you have opted-out from such communications.

We will not implement any material changes to the way we process your personal information, as described in the Privacy Policy, unless we have notified you. We will notify you of any such material changes and may request you to acknowledge such changes. Unless we require the acknowledgment, you shall be deemed to have agreed to the changes, if you continue using the Service upon the notification.

Singapore

By clicking “Register” or “Accept”, you consent to the cross-border transfer of your information in accordance with Section (2) of this Privacy Policy.

South Africa

You have the right to lodge a complaint with the Information Regulator (South Africa) by emailing it on inforeg@justice.gov.za. The Information Regulator (South Africa)’s physical address is 33 Hoofd Street Forum III, 3rd Floor Braampark, Braamfontein, Johannesburg, South Africa.

Taiwan

We do not knowingly collect or solicit personal information from anyone under the age of 7 or knowingly allow such persons to register an account with us. If you are under 7, please do not attempt to use or register for our Service or send any personal information about yourself to us. No one under the age of 7 may provide any personal information to us while using the Service. In the case of users located in Taiwan, persons under the age of 20 are required to obtain parental/guardian consent prior to using the Service.

Thailand

By clicking “register” or “accept”, you acknowledge that you have read, understood, and agree to this Privacy Policy. If you do not agree with this Privacy Policy, you must not use the Service.

You may request us to discontinue, to restrict the use or provision of, and/or to request for data portability of any and all of your personal information which is stored by us, to the extent provided by the applicable data privacy laws and regulations in Thailand, including the Thai Personal Data Protection Act. When you wish to make such requests, please contact us at info@fibrousdysplasia.org.

We will give you notice by email of any changes to this Privacy Policy, and give you an opportunity to reject such changes, failing which the changes will become effective as stated in the notice.

Turkey

You have legal rights, which are set forth in Article 11 of the DPL, in relation to the personal information data we hold about you. As a Turkish data subject, you may have right to apply to the data controller and (and to the extent permitted under applicable laws and regulations):

  • learn whether or not your personal data has been processed;
  • request information about processing if your personal data has been processed;
  • learn the purpose of processing of your personal data;
  • know the third parties in the country or abroad to whom personal data has been transferred;
  • request rectification in the event personal data is incomplete or inaccurate;
  • request deletion or destruction of personal data within the framework of the conditions set forth under Article 7 of the Personal Data Protection Law (Turkey); and
  • object to certain processing of data, and seek certain remedies in accordance with the Personal Data Protection Law (Turkey).

United Arab Emirates 

You consent to the collection, use, disclosure, transfer and storage of your personal information.

We may voluntarily report a cyber-security incident where it constitutes a crime under UAE law (e.g. under the UAE Cybercrime Law). The incident can be reported to the relevant authorities for the purpose of investigations. Please note that voluntary reporting of a cyber-security incident can also be made to the UAE Computer Emergency Response Team (“CERT”). CERT is a security awareness organisation that provides a process for logging incidents and advising on known cyber security threats in the UAE.

Vietnam

By accepting this Privacy Policy, you expressly agree and authorize us to collect, use, store, and process your personal information, including, lawfully disclosing and transferring it to third parties, as described in this Privacy Policy.

We maintain international standards and security practices for data protection. When your personal information is transferred within or outside your jurisdiction of residence, it will be subject to the same or higher levels of security practices and data protection by the recipient entity as adhered to by us.

Where we permit any third parties to collect and use your personal information, we shall take reasonable measures to ensure that the third parties do not further disclose the personal information.

Your personal information, if required to be disclosed to the law enforcement agencies, public authorities or other judicial bodies and organizations, it will be disclosed upon receipt of a written request from such organizations.

Your rights

You have the right to access, correct, and erase the personal information we hold about you. You also have the right to withdraw your earlier provided consent to collect, store, process, use and disclose your personal information and to request us to stop providing your personal information to a third party.