Privacy Policy

Principles

The rights to privacy of people having dealings with FSHD Global Research Foundation Limited - members, donors, people who receive a service from FSHD, volunteers, employees, prospective employees etc - shall be ensured.

Personal data in any form will be managed with diligence.

FSHD will be open and accountable about how personal information is handled.

 

What Information is Collected and How

 The type of information collected and retained by FSHD includes personal information about:

  • Research Funding Applicants
  • FSHD affected people
  • Volunteers
  • Donors
  • People receiving information and invitations from FSHD
  • Other people who come in contact with FSHD

 

Do We Use Cookies?

Yes - cookies are pieces of information that will be sent by FSHD when you log onto our web site.  These will be stored on your computer's hard drive, to allow us to recognise you as a user when you next visit.

 

Personal Information Personally Provided

FSHD collects personal information held about an individual by way of forms filled out, face to face meetings and interviews, telephone calls, facsimiles, email and sometimes through use of consultants.

 

When collecting information:

  • Only information necessary for the activities of FSHD will be collected and recorded
  • Information given in confidence will remain confidential

 

Personal Information Provided By Other People

In some circumstances FSHD may receive personal information about an individual from a third party - re example, references or referrals.

 

FSHD's Use of Personal Information Personally Provided

In general, FSHD will use or disclose information only for the primary purpose for which the information was collected.  When information is to be used or disclosed for other than the primary purpose for which it was collected, consent will be obtained wherever practicable.

Secondary use of disclosure will occur only if the individual agrees, or law allows the use or disclosure of information.

FSHD will not send personal information about an individual outside Australia without obtaining the individual's consent or complying with National Privacy Policies.

 

Management and Security of Personal Information

As a condition of employment, FSHD's staff is expected to respect the confidentiality of information and the privacy of individuals.

FSHD will take reasonable steps to ensure that the information it collects, uses, retains or discloses is accurate, complete, and up to date.  However, the accuracy of that information depends to a large extent on the information individuals provide. 

It is recommended that people dealing with FSHD:

  • Advise us of any errors in personal information
  • Keep us up to date with changes in personal information such as name and address

To update personal information, please contact FSHD Global Research Foundation Limited on:

  • 02 8007 7037 during office hours (9:00am - 5:00pm, Monday to Friday)

Or

  • In writing to FSHD Global Research Foundation Limited, PO Box A296, Sydney South NSW 1235, Australia

Or

  

An individual has the right to obtain access to any personal information FSHD retains and to advise of any perceived inaccuracy.

Please contact the Administration Officer at the above contact details, in writing, if you wish to obtain access.