Privacy Policy


This Privacy Policy sets out the approach that the HSP Research Foundation takes in relation to the treatment of Personal Information. It includes information on how the HSP Research Foundation collects, uses, discloses and keeps secure, individuals’ Personal Information.

This policy has been drafted having regard to the HSP Research Foundation’s obligations under the Privacy Act 1988 (including the new National Privacy Principles) (The Privacy Act).

This Policy is a public document and has been prepared in light of National Privacy Principle 5, Openness.

Collection and Use of Personal information

The HSP Research Foundation collects Personal Information for the purposes of:

  • Administering the Foundation and its services such as maintaining a database of members corresponding and communicating with people such as members, prospective members, medical researchers, providers of services to the Foundation, international peer organisations, volunteers, donors, grant-making bodies, and so on.
  • Accepting money as donations and membership subscriptions, issuing receipts and keeping financial records as required by law.
  • All personal financial data such as bank account information, cheque information, EFT or credit card information is securely discarded once a transaction is completed.

Sensitive Information

Sensitive Information is neither collected nor kept. Sensitive Information means information or an opinion about individuals’:

  1. Racial or ethnic origin
  2. Political opinions
  3. Membership of a political association
  4. Religious beliefs or affiliations
  5. Philosophical beliefs
  6. Membership of a professional or trade association
  7. Membership of a trade union
  8. Sexual preferences or practices
  9. Ciminal record that is also personal information, or
  10. Health information, except information volunteered by individuals about their HSP status and related issues. This information is kept to:
    • offer communications and resources to individuals in the HSP community to aid in management & treatment
    • provide data that may facilitate HSP research or clinical trials
    • provide data that collectively helps develop understanding of HSP demographics.

Information for these purposes is always provided anonymously except in cases where permission is expressly sought and given. Individual records are accessible only to individuals authorised by the HSP Research Foundation for specified purposes or projects. All such individuals have separately entered into a signed agreement for the protection and maintenance of the privacy and confidentiality of the individuals whose records are kept. Information that can be identified to an individual is never shared otherwise without the consent of that individual.

The HSP Research Foundation takes all reasonable precautions to protect the privacy of individuals’ data and uses it only for the purposes stated. Personal information is not sold, shared or otherwise provided to any third party, individual or organisation under any circumstances, except as stated in this policy or without the written consent of the individual for a specific stated purpose.

The HSP Research Foundation has no control over the collection or use of personal information by other organisations to whom data may be provided by an individual, such as via a website linked to the HSP Research Foundation website. It is recommended that individuals check the Privacy Policies of other organisations, and otherwise satisfy themselves as to security, privacy and confidentiality before providing data to other organisations.

The HSP Research Foundation may disclose Personal Information to law enforcement agencies, government agencies, courts or external advisers where permitted or required by law.

Medical Data concerning HSP

Medical, health and genetic related information is the concern of the individual and their health professionals and not that of the HSP Research Foundation.

However, to build an understanding of the disease and its impact, to educate and inform, and to facilitate research, the HSP Research Foundation is interested in collective data and statistics, and case study information. The HSP Research Foundation may therefore collect and retain information about individuals concerning HSP, but this is then used anonymously, that is, in the absence of any personal identification.

If, in the future, a legitimate need arises for the ethical collection of personally attributable medical information regarding an individual’s HSP status, this will be done only with the full knowledge and consent of the individual or of the individual’s parent or guardian if a minor.

Rights and Choices

Individuals may opt not to receive notifications of activities or events by contacting the HSP Research Foundation and advising of their preferences at:

HSP Research Foundation
P.O. Box 4064

Email: [email protected]

Individuals can access the personal information that the HSP Research Foundation holds about them by applying as above.

Last updated March 2022

Editorial Policy

  • We seek to present the most important evidence-based research findings on the HSPs as they emerge.
  • Based on research studies that are peer-reviewed and published in reputable journals.
  • Maximise the likelihood that the research is of sufficient quality to produce reliable scientific evidence with reasoned findings and conclusions.

Reading: Increase in predatory journals https://www.nature.com/articles/d41586-019-03759-y