Last Updated on Monday, 19 May 2014 20:46
Published on Monday, 19 May 2014 20:44
Gorlin Syndrome Group has set up a number of social media platforms, including HealthUnlocked, Facebook and Macmillan to provide general information about what we do, and to give individuals, their relatives and carers affected by Gorlin syndrome the chance to talk to each other.
We know that individuals affected by the condition can find it useful to communicate with others in similar positons, exchanging views, experiences and even hints and tips about coping with the physical and emotional issues. It is our aim to ensure that all of our social media sites offer an environment that's a comfortable place for this type of exchange. In order to do so we have produced a Moderation Policy and we ask that everyone who uses these forums or other social media platforms stick to the following simple guidelines:
- do not post or upload any content or use social media platforms in a way that breaches any law.
- remember that everyone is entitled to their opinion. Before making a post, consider that people interpret things in different ways and what may be innocent to one person could offensive or upsetting to another. Similarly, you might disagree with something someone has posted but that does not mean they're wrong.
- if you respond to a post you find offensive, read your response before you post it and consider whether it is reasonable or whether it will make things worse. You always have the option of reporting it to the forum team using the messaging facility within each forum. Arguments on the forum upset other users, not just those involved.
- you must not post or upload any content or use social media platforms in a way that is offensive, malicous, threatening, defamatory, vulgar, obscene, harassing, false, misleading or unreliable, or that brings or is likely to bring the Gorlin Syndrome Group into disrepute.
- comments must not incite hatred on the basis or race, religion, gender, nationality or sexuality or any other personal characteristic.
- do not break the law - this includes libel, condoning illegal activity and breaking copyright.
- you agree to not contribute content that will infringe another user's organisation's or person's rights (including rights of privacy and publicity).
- do not reveal personal details; such as private addresses, phone numbers, email addresses or other online contact details including passwords, as these forums are public and people are not necessarily who they say they are.
- do not advertise commercial products and services - you can mention relevant products and services as long as they support your comment in English. Translation facilities are available on Facebook and HealthUnlocked for those whose first language is not English.
- using your access to Gorlin Syndrome Group forums, our website or other social media platforms to send unsolicited bulk email or spam is forbidden.
- the Gorlin Syndrome Group reserves the right to suspend or terminate your access to our forums, website and other social media platforms immediately at any time.
- any content you post to our foums or other social media platforms may be used by the Gorlin Syndrome Group.
- if your access to any of our forums or social media platforms is terminated or suspended for any reason, you will need to gain approval from the Gorlin Syndrome Group administrator for future access.
- if you are under 16 years of age, please get your parent/guardian's permission before submitting a comment.
- we reserve the right to suspend comments at any time and remove comments older than six months. Where we choose not to publish comment for a reason other than those listed above we will reply to the commenter by email explaining our reason and inviting them to make appropiate changes so that the comment can be reconsidered.
if any of these rules are broken by you or other users, or if you have any concerns about material posted to forums or social media platforms.
- the Gorlin Syndrome Group operates a reactive moderation policy and accepts no responsibility for any content, but reserves the right to remove/edit any content at any time.
- you are wholly responsible for all content posted by you.
- only post content that you have written yourself. If you would like to share the work of another person that may be relevant, be sure to only use a short excerpt of the material and acknowledge the person who wrote it. If you would like to share the entire work, include a link to the content so that others can access it. We will remove posts that breach copyright immediately. We really don't have a choice on that!
Comments, compliments and complaints
- forum members sometimes prefer to complain about (or compliment) the charity using the forum. It is valuable to some users to know that others are aware of their complaints but this isn't the best way to contact the charity about these issues.
if you have comments, compliments or complaints.
- we do our best to moderate social media platforms according to these guidelines and the terms of us but we sometimes miss things.
- We read every comment and respond where we can.
We reserve the right to modify this statement and amend these terms at any time without notice.
Gorlin Syndrome Group
Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello. We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support.
Gorlin Syndrome Group is Registered Charity in the UK - No 1096361