About Us

The Lupus Association of NSW Inc.

The mission of the Lupus Association is to work towards a world without lupus and associated connective tissue diseases through support, education and research into a cure.

The Lupus Association has over 4000 members Australia-wide and provides services to those newly diagnosed as well as those who have been living with lupus for some time.

Please explore our website and discover as much as you can about this life-changing disease. For further information you can contact the Association directly to speak with someone who can guide you to a more detailed understanding. With your help and continued financial support we can assist researches and practitioners with developing better and more effective diagnosis and treatment programs for lupus patients, as well as support research efforts to find a cure for lupus.

The Lupus Association provides this website to allow users to gather information. The opinions and statements expressed by the authors or contributors to this website do not necessarily reflect the opinions or positions of the Lupus Association.

The mission of the Lupus Association is to work towards a world without Lupus and associated connective tissue diseases through support education and research into a cure.

The Lupus Association is a community based counselling and advocacy service with over 1100 members throughout Australia. We are a non-government, not for profit, self-help organisation.

We provide an information and counselling support service for those who have recently been diagnosed as well as those who have been living with lupus for some time.

History of The Lupus Associtation

Originally known as the “Lupus Club”, a group of people regularly met at the Royal North Shore Hospital to offer each other support and advice on learning to live with lupus. The Club was founded by Colleen Hook in 1979, with the first meeting attracting only a few people. As people living with lupus became aware of the Club, the group grew quickly and it became clear that a larger organisation needed to be developed. In time and with the support of NSW Health the Lupus Association of NSW Inc. was created and was able to employ a part-time administrator. Membership grew well beyond 800 members. Today we have over 4000 registered members.

In recent years, growth has occurred outside of New South Wales and the ACT with membership growing in Queensland and Victoria. The Lupus Association of NSW Inc. is Australia’s most active and longstanding lupus group, offering advice, information, support and networking for patients and those around them. In 2011-12, membership reached current financial members, yet the effects of the Association are more far reaching through the sharing of advice and creation of support networks throughout Australia.

Organisations and small support groups in other states often seek advice from the Lupus Association of NSW Inc. and the Association is happy to help out for the benefit of all those affected by lupus. The relationships between the Lupus Association of NSW Inc. and groups in other states is often bilateral, with information and resources being shared between the groups as much as possible. This is helping to strengthen the lupus community and allow these groups to provide greater support, raise more awareness and increase fundraising to assist research into lupus and other autoimmune illnesses.

Lupus Social Media Policy

PURPOSE AND SCOPE

This Policy applies to all Lupus Association of NSW inc. (LANSW) employees, volunteers and contractors who use social media that either (a) uses LANSW information, or (b) makes reference to LANSW or LANSW business, people, colleagues and former colleagues, work, policies, research, relationships and competitors including personal use of social media that references LANSW’s interests (collectively, “covered social media activities”).
“Social media” are digital technologies and practices that enable people to use, create, and share content, opinions, insights, experiences, and perspectives. Social media can take many forms, including text, images, audio, video, and other multimedia communications. However, the hallmarks of all social media are user-generated content and interaction. Popular examples include blogs, social networking websites such as Facebook and Twitter, and video-sharing websites such as YouTube. Additional examples are contained in the Glossary appended to this Policy. Social media includes both internal social media viewable by only LANSW audiences and external social media visible to third parties.
For the purposes of this Policy

A LANSW-hosted site is one that is initiated, owned and managed either by or on behalf of LANSW.
A LANSW-sponsored site is one that is initiated, owned and managed by another organisation, but which has received a LANSW contribution (e.g. a disease state, GP education site etc). The sponsorship of the site must meet internal and external requirements.

POLICY

This Policy does not apply to one’s personal use of social media if (a) LANSW information systems are not used AND (b) no reference is made to LANSW’s interests. Nothing in this Policy shall be construed as prohibiting any conduct protected by applicable law.
Every employee, volunteer or contractor who engages in covered social media activities is personally responsible for ensuring the accuracy and truthfulness of their communications and for compliance with this Policy or any other applicable policy, law, guidelines, or regulation. All employees, volunteers or contractors are personally and legally responsible for the content of the commentary they post and can be held liable for unlawful activities (examples of this include defamatory, libellous, obscene, or discriminatory statements or posting material that violates intellectual property laws or improperly discloses confidential or proprietary information of LANSW or any other party). Such improper activities could also result in disciplinary action up to and including termination of employment or, for contractors, termination of assignment.
All employees, volunteers or contractors who engage in covered social media activities must abide by the following rules:

General rules applicable to all social media use

Be transparent and make necessary disclosures
Anyone who refers to LANSW interests in posts on external social media must disclose their association with LANSW by including the following disclaimer:

“I am [an employee of] [a contractor for] LANSW. The statements or opinions expressed on this site are my own and do not necessarily represent those of LANSW.”

This disclosure is not required if the post is part of the employee, volunteer or contractor’s official job responsibilities, and they are authorised to speak on behalf of LANSW.

Do not make unauthorised disclosures
If you have signed a confidentiality agreement with LANSW, abide by its terms.
On both internal and external social media, do not disclose any:
- Information about financial transactions, legal matters, internal or government investigations, or litigation. Disclosure to any third parties could compromise the confidentiality and legally privileged status of this information.
- Personal information about other individuals without their consent. The term “personal information” means any written or electronic information that relates to an identified or identifiable person. This includes information about employees, volunteers or contractors, former colleagues, applicants for positions within LANSW, independent contractors, or other individuals associated with LANSW, including on social media sites such as LinkedIn. Please remember, that as noted above in this Poliscy, any references to LANSW interests, must include the following disclaimer:

“I am [an employee of] [a contractor for] LANSW. The statements or opinions expressed on this site are my own and do not necessarily represent those of LANSW.”

Obtain necessary permissions
- Do not post photos, videos or other media on any social media sites without the consent of all those exhibited in such media.
- Do not tag, identify or comment on anyone in any social media without such person’s consent.
- Do not post any material on any social media sites which would violate the copyright or trademark rights of others.

Be truthful, accurate, and respectful

Do not use discriminatory, harassing, intimidating, or offensive language on either internal or external social media. All communication must be free from harassment regarding racial, ethnic, religious, physical or sexual characteristics, sexual orientation, or any other protected classification.
Do not make any statements that are false, misleading or unsubstantiated.

Journalist/media enquiries must be referred to the President

The President of LANSW or delegate provides final sign off on all comments provided to the media, whether they be proactive or reactive. Where necessary this is done in consultation with the appropriate Scientific Advisory Committee member, employee or volunteer.

Abide by LANSW’s email and IT systems policy

Use of LANSW information systems for social media activities, including for personal use, is subject to the email and IT systems policy.
Personal social media activities must not interfere with your job responsibilities or commitments.

Ask First, Post Later

If you have any doubt at any time about whether to post or publish something via social media on LANSW hosted sites, or questions about this Policy, please contact the President or delegate for advice.

Additional rules applicable to personal posts on external social media (those made outside of an individual’s official job responsibilities)
Use of a LANSW email address is use of LANSW’s information system and thus is a covered social media activity. Personal posts on external social media must be generated from a personal email account. This means, for example, you must not use your LANSW email address for your personal Facebook profile. However, you may use your LANSW email address for a site associated with your official job responsibilities (e.g. a social media site associated with a professional/industry association).
Personal posts that refer to LANSW’s interests that are not otherwise prohibited by this Policy must include the following disclaimer:

“I am [an employee of] [a contractor at] LANSW. The statements or opinions expressed on this site are my own and do not necessarily represent those of LANSW.”

GLOSSARY

General Terms

“Information System,” For the purposes of this policy, an information system is any telecommunications and/or computer related equipment or interconnected system or subsystems of equipment used in the acquisition, storage, manipulation, management, movement, deletion, control, display, switching, interchange, transmission, or reception of voice and/or data, and includes software, firmware, and hardware. This definition is intentionally broad and includes any device or service connected to a LANSW owned asset.
“Personal Information,” Means any written or electronic information that relates to an identified or identifiable person (“Individual”). In practice, this means any information that can reasonably be used to identify a living person, including factual information about such person, such as name, address, telephone number, social security number, e-mail address or information relating to the health condition (physical or mental) of an Individual, as well as information about his/her opinions or beliefs. Under certain local laws and regulations, even if such information is encoded (i.e. converted to a format that makes it impossible to identify an Individual without access to the “key” that allows the information to be reassociated with the Individual), subject to other de-identification techniques or is publicly available, it may be treated as Personal Information.

SOCIAL MEDIA TERMS

Social media encompasses, but is not limited, to the following areas:

“Applications” Applications are self-contained software that are typically served via a website or mobile device. Applications may be used to deliver information or content, increase user interaction, or provide a service. Common examples of applications are widgets, advergames, and device-specific software like iPhone or Blackberry Apps.
“Audio Syndication (Podcasts)” A podcast is a series of digital media files (either audio or video) that are released episodically and downloaded through web syndication. The mode of delivery is what differentiates podcasts from other ways of accessing media files over the Internet. The classification of a podcast refers to audio files that are shared online and meet the following three criteria: first, that it is episodic; second, that it is downloadable; and third, that it is program-driven, mainly with a host and/or theme. Popular delivery methods include RSS, Atom, and OPML. Popular listening platforms include iTunes, Zune, Juice, and Winamp.
“Blogs” A blog (a contraction of the term “weblog”) is a type of website, usually maintained by an individual with regular entries of commentary, descriptions of events, or other material such as images or video. Entries are commonly displayed in reverse-chronological order. Popular blog platforms include Blogger, WordPress, Typepad, Livejournal, and Vox.
“Image Sharing” Image sharing websites allow individuals to upload digital images or photos to the Internet via an image host. The image host will then store the digital images on its server and display them to its visitors, typically along with a variety of sharing tools and code options. Visitors may use these options to display the digital images on different websites in addition to the website operated by the image host. In some instances, users may be allowed to download original copies of the digital images to their own computers. Popular video sharing platforms include Flickr, Photobucket, TinyPic, Picasa, and Shutterfly.
“Microblogs” Microblogs are a form of blog that allows users to send brief text updates or micromedia such as images or video and publish them. These messages can be submitted by a variety of means, including text messaging, instant messaging, E-mail, digital audio or the web. Microblogs differ from traditional blogs in that entries are typically smaller in actual size and aggregate file size. Popular microblog platforms include Twitter, Tumblr, Yammer, Pownce, and Plurk.
“Slide Sharing” Slide sharing websites allow individuals to upload slide decks to the Internet via a document host. The document host will then store the slide decks on its server and display them to its visitors, typically along with a variety of sharing tools and code options. Visitors may use these options to display the slide decks on different websites in addition to the website operated by the image host. In some instances, users may be allowed to download original copies of the documents to their own computers. Popular video sharing platforms include Slideshare, Authorstream, Slideserve, and Slideboom.
“Social Bookmarking” Social bookmarking sites allow users to share, organize, search, and manage links to web resources. Unlike file sharing, the resources themselves aren’t shared, merely bookmarks that reference them. Descriptions may be added to these bookmarks in the form of metadata, so that other users may understand the content of the resource without first needing to visit the link. Such descriptions may be free text comments, votes in favour of or against its quality, or tags that collectively or collaboratively become a folksonomy. Popular social bookmarking sites include Digg, Delicious, Reddit, and Propeller.
“Social Networks” Social networks focus on building online communities of people who share interests and/or activities, or who are interested in exploring the interests and activities of others. Most social networks provide a variety of ways for users to interact, such as user profiles, image and video sharing, interest-based groups, public discussion threads, private messaging, and instant messaging services. Popular social networks include Facebook, LinkedIn, MySpace, Bebo, and Orkut.

“User Forums and Discussion Boards” User forums are similar to social networks, but with less robust personal networking options. The focus of a user forum, which is also sometimes referred to as a discussion or message board, is a threaded conversation platform in which members discuss issues according to pre-defined topics. Each discussion has opportunity for response from other members of the forum and is normally maintained in reverse chronological order, with the most recent comment being displayed at the top of the thread. In many cases, members may also create user profiles and send each other private messages, similar to a social network; however the focus of a user forum remains strongly centered on threaded discussions.
“Video Sharing” Video Sharing websites allow individuals to upload video clips to the Internet via a video host. The video host will then store the video on its server and display the video to its visitors, typically along with a variety of sharing tools and code options. Visitors may use these options to display the video on different websites in addition to the website operated by the video host. In some instances, users may be allowed to download original copies of the video files to their own computers. Popular video sharing platforms include YouTube, Metacafe, DailyMotion, Revver, and Blip.TV.
“Virtual Worlds” A virtual world is a computer-based simulated environment intended for its users to inhabit and interact via avatars. These avatars are usually depicted as textual, two-dimensional, or three-dimensional graphical representations. Some, but not all, virtual worlds allow for multiple users. The computer accesses a computer-simulated world and presents perceptual stimuli to the user, who in turn can manipulate elements of the modelled world. Such modelled worlds may appear similar to the real world or instead depict fantasy worlds. Example rules are gravity, topography, locomotion, real-time actions, and communication. Communication between users may range from text, graphical icons, visual gesture, and sound. Popular virtual worlds include Second Life, The Sims 3, IMVU, Kaneva, and There.com.
“Wikis” Wikis are websites that allow users to create web pages that are collaboratively edited using a common web browser. Wikis are often used to create collaborative websites, to power community websites, for personal note taking, in corporate intranets, and in knowledge management systems. Popular wikis include Wikipedia, WikiWikiWeb, WikiHow, and Wikia.

Privacy Policy

New amendments to the Commonwealth Privacy Amendment (Private sector) Act 2000 came into effect on 21 December, 2001.

The Lupus Association recognises that your privacy is important and is committed to protecting your personal information. The Association is taking a number of steps to ensure your privacy and personal information is protected in accordance with the Act.

Your personal information is collected to enable us to maintain an up-to-date membership database and target our services in the best interests of our members. It may also be used to gather, aggregate and report statistical information.

You have a right to gain access to your personal information held by the Association and have it corrected if necessary.

Third parties:

All persons handling your personal information in the course of administering the Association and providing services to our members will be bound by confidentiality agreements. Your personal information will not be shared with other third parties, without your consent.