Privacy and ALDS Inc.
Currently the ALDS has processes in place to protect your privacy and we already do the things required under the Privacy Act, which became compulsory in December for all health service providers. Our new policy strengthens the processes we have in place to keep member’s information confidential.
As you know, when a person joins the ALDS, we collect relevant personal details for the purposes of offering support and information about ALDS. These contact details are added to our secure computer database. As part of our policy, we do not share identifying details about members with any other parties without permission.
However, from time to time we may contact members to seek their permission to put other members in contact with them as this information helps the ALDS to meet our vision to "Provide assistance and information to those affected by leukodystrophy. And support research." When you became a member of the ALDS, you may have given the ALDS verbal permission to take this course of action.
We now require this permission in writing from all members. Information sharing is a key strength of our support group but this can only happen with permission and goodwill.
To obtain further information please contact the ALDS Office.