Porphyria Association Inc. Australia
Social Media Policy  We welcome and encourage open discussion and comments on the Porphyria Association Inc. social media pages. We look forward to hearing from you in all circumstances, even when you have criticism of the Association. However, we work hard to ensure that the Porphyria Association Inc. social media is a supportive environment for our members, friends, families, staff and general community, thus we expect that your comments and posts will be respectful of others. There are two pages that the Porphyria Association moderates; Porphyria Association Inc. (Australia) and Australian Porphyria Support Group. The two pages have different purposes; the Porphyria Association Inc. (Australia) is the official Facebook page of the Porphyria Association and acts as a platform for communicating with the wider public and porphyria community about awareness campaigns, meeting times and latest events. As this group is a public platform, all comments and posts require approval before being displayed. The Australian Porphyria Support Group is a support community that is closed to the general public and thus posts cannot be viewed by anyone who is not a member of the group. Requests for membership are approved by a member of the Porphyria Association Inc. committee. Participation in this group is done at your own risk and you must use your best judgement when observing the conversations or participating in the dialogue on this page. Any posts or comments that contain advice that the committee considers dangerous or could potentially cause medical harm to others, will be deleted. This includes, for example, all discussion about medication, natural therapies and specific dietary advice. Any posts regarding acute attack advice or the description of an acute attack should be treated very carefully and that person should always be encouraged to attend their local emergency department or contact their porphyria specialist. It is not the role of this support page to give advice or opinions regarding acute attacks. This is not negotiable. Any user that posts a comment that contradicts this directive will be immediately removed from the group, as this is extremely dangerous. Visitors, who perpetuate views that are contraindicated by evidence-based research and global health expertise, and which pose a threat to public and individual health, will be immediately blocked. This includes participants who harass other visitors to the page with medical information. In addition to this, any posts or comments that contain offensive language, or display bullying behaviour designed to upset or humiliate another member will be deleted. The offending person will either be given a warning or removed and blocked from the page immediately. This extends to any posts which may unreasonably upset the community. For example, posts referring to the condition by offensive terminology such as “the vampire disease”. Users will be given one warning if the incident was minor, after that point, should they continue to post inappropriate content, they will be removed from the group. Please keep in mind that when you post a comment on social media, it is considered published material. Whist we take care in providing the most secure community as possible for our members to have open discussion about living with porphyria, these websites can easily be hacked or other members can screenshot conversations and publish them elsewhere without your permission or knowledge. Therefore, you should consider how much personal and medical information you are willing to publish on the support page. In the instance where severe psychological or physical harm has occurred due to another member due to your activity on any of our pages, this page can be used as evidence in an Australian Court of Law.
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Social Media Policy Copyright 2017 Porphryia Association Inc.