In this Privacy Policy Statement, “RDHK” means Rare Disease Hong Kong Limited and the terms “we”, “our” and “us” mean one or more members and staff of the RDHK, as the context requires.

We respect your legal rights in connection with your Personal Data (as defined in the Personal Data (Privacy) Ordinance (Cap. 486)) and are committed to protecting the privacy, confidentiality and security of the Personal Data which we hold and pledge to comply with the requirements of Personal Data (Privacy) Ordinance (the “Ordinance”).  We are also committed to ensuring that all our employees and agents uphold these obligations. 

This Privacy Policy Statement sets out our policies and practices in relation to how we protect, use and handle your personal data.  Please read the following carefully and in conjunction with the Personal Information Collection Statement provided when we collect your personal data (the “PICS”), if any.

From time to time and for the purpose of carrying on any of our operation or business, you may be requested to supply Personal Data to us.

Types of Personal Data collected by us may include, but not limited to:-

1. Your personal information and contact information such as your name, telephone number, address, email address, fax number, gender, date of birth, identity card number;

2. Your business information such as company name and business title;

3. Your account details, including account numbers, or user accounts;

4. Your educational and professional background;

5. Your image and voice, including photograph, video or audio recordings; and

6. Such other personal information as specified in the PICS.

Supply of Personal Data to us is generally non-obligatory but failure to do so may result in us being unable to process your applications or provide you with the relevant services or features (whichever applicable).

Your Personal Data may be used for the following purposes or other purposes which are directly-related to the following purposes:-

1. Organizing and delivering information about events and activities;

2. Following up and processing application or registration for events and activities;

3. Carrying out surveys, analysis and research and collating statistical information;

4. Facilitating and maintaining communication;

5. Subscription of publications and newsletters;

6. Promoting events or activities of any member of the RDHK, such as sending you annual reports, newsletters, information or materials regarding activities and events organised or arranged by us;

7. Recruitment and human resource management purposes;

8. Following up and handling complaints and enquiries;

9. Making such disclosures as required by applicable laws, rules and regulations; and

10. Such other purposes as specified in the PICS.

Occasionally, your Personal Data such as your name, phone number, your correspondence address and email address, held by a member of the RDHK may be used by such member or other members of the RDHK in direct marketing for sending you marketing or promotional communications containing news and/or promotions about events or activities organised or arranged by us.  

We may not use your Personal Data or provide your Personal Data to other persons for use in direct marketing unless we have firstly obtained your consent (which includes not indicating an objection) to any intended use or provision.

You can always opt-out from receiving such marketing or promotional communications free-of-charge by contacting our Officer (whose contact details can be found below).  We must, without charge to you, (1) cease to use your Personal Data in direct marketing, (2) cease to provide to other members of the RDHK your Personal Data for use in direct marketing; and/or (3) notify other members of the RDHK to cease to use your Personal Data in direct marketing, if you so require.

If you provide your e-mail address, we may periodically contact you with our updated information and newsletters.

By using our Websites, you agree that we can store and access cookies, IP address and use other methods in order to collect website usage data and improve your on-line experience.

A cookie is a small account of data created in a computer when a person visits a website on a computer.  It often includes an anonymous unique identifier.  A cookie can be used to identify a computer.  It, however, is not used to collect any personal information.  In other words, it does not have the function of identifying an individual user of the website.

We use cookies on our Websites to track visitor preferences.  These cookies allow the Websites to remember information that changes the way the Websites behave or look, such as your preferred language.  You may refuse to accept cookies by altering the settings on your internet browser but it should be noted that if you choose not to permit cookies, some areas of the Websites may not function properly.

The Personal Data provided by you herein will be kept confidential but may be made available, on a need-to-know basis, to the following parties as necessary for any of the purposes stated in the Use of Personal Data section above:<

1. Any member of the RDHK, our employees and the operating units operated by us;

2. Any agent, contractor or third-party service provider who provides administrative, telecommunications, computer, information technology, payment or other services to us in connection with its operation;

3. Any person, government, regulatory or law enforcement authority or administrative organization to whom we are required by law or the court to disclose or transfer your Personal Data; 

4. Any person under a duty of confidentiality to us, including our accountants, legal advisers or other professional advisers; and

5. Such other parties as specified in the PICS. 

Our Websites may contain links to other sites and pages which are operated by third parties.  We have no control over the content of the linked websites or the way in which the operators of those websites deal with your Personal Data.  You should review the privacy policy for those third party websites to understand the ways in which your Personal Data may be used by those third parties.

Our policy is to retain Personal Data for no longer than is required to fulfil the purposes (or any directly related purposes) for which the data was collected or to be used, subject to legal, statutory and regulatory requirements mandating the retention of data, after which the Personal Data will be erased or destroyed without further notice to you.

We may change this Privacy Policy Statement from time to time.  We encourage you to check this Privacy Policy Statement occasionally to ensure that you are aware of the most recent version.

You are entitled to request access to the Personal Data held by us about you and to correct and erase such data in accordance with the provision of the Ordinance.  We may charge a reasonable fee for the processing of such data access request.

We will take reasonable steps to verify your identity before granting access or making corrections to or erasing your Personal Data to protect your privacy and identity.

Request for access, correction and/or erasure of your Personal Data, as well as withdrawal of consent, where applicable, should be made to our Data Protection Officer by sending an email to  info@rdhk.org or writing to the following address:-

Rare Disease Hong Kong Limited
(Confidential)
RM 101, G/F, Lai Huen House,
Lai Kok Estate, Cheung Sha Wan,
Kowloon

This Privacy Policy Statement has been translated into Chinese. If there is any inconsistency or ambiguity between the English version and the Chinese version, the English version shall prevail.

This version was last updated in February 2021.