Forum
Alström Syndrome UK have a dedicated community area within HealthUnlocked Communities. This is a safe, lively and supportive online space designed around patient groups for patients, families and carers to share information on their health experiences.
You can visit the Alström Syndrome UK community here. Prior to joining the community you must be in agreement with the guidelines below.
If you have any questions regarding these guidelines please contact Catherine Lewis on 01803 613117 or email catherine.lewis@alstrom.org.uk
Guidelines
Content that users post on a HealthUnlocked community is moderated by Alström Syndrome UK and, on occasion, by HealthUnlocked. Moderation takes place after content is posted.
Information posted on the site can support but not replace the relationship between you and doctors or other healthcare professionals. Information from the site may inform your discussions and exploration of treatment options with healthcare professionals. You should always consult a healthcare professional if considering changing treatment or medication.
Content should be taken as the views of the individual member and does not represent the views of Alström Syndrome UK or of HealthUnlocked.
Moderation helps maintain positive, open discussion and content may be edited or removed to ensure that the community is supportive and responsive to the majority. Content may be edited or deleted even where it is not negative, abusive, malicious or deliberately misleading of itself.
Any content posted on the HealthUnlocked community can be read, used, reproduced and cited by other users of the site. You have the option to delete content you have posted.
Content should never be abusive, malicious or deliberately misleading. If you consider someone else’s content is, please report it via the ‘Report abuse’ option or via the Feedback button to the HealthUnlocked team. Content like this is likely to be edited or removed.
You are reminded that the site is not the forum to ‘name and shame’ or to create negative feedback on identifiable individuals. Negative references to identifiable individuals are likely to be edited or deleted.
Your participation in the site should be with respect, honesty and in the spirit of supporting and learning from your fellow users.
Members should not paste personal contact information on the site though may choose to do so in the Messages module. Members should have general regard to their online safety; information on online security is widely available, for example from Directgov
Posting content on your HealthUnlocked community is taken as your agreement to post information that is true and correct to the best of your knowledge. You agree to post information that is primarily drawn from your personal experience.
Where users post third party information, such as information on new treatments, you are asked to provide references and links wherever relevant and possible.
As moderation occurs after posting, neither the patient group nor HealthUnlocked is responsible for any injury or offence that a member may draw from another member’s content.
The “Messages” module is commonly referred to as private messages or messaging. HealthUnlocked can access all messages sent on the platform and may do so if it considers it important to the safe running of the site for all members.
Individual members may not be informed where content is edited or deleted. Moderation is subject to capacity and often relies on individual judgement. Where content is edited or deleted neither Alström Syndrome UK nor HealthUnlocked need to provide a reason for this.
Your contributions must:
• be accurate (where they state facts);
• be genuinely held (where they state opinions); and
• comply with applicable law in the UK and in any country from which they are posted.
Contributions must not:
• contain any material that is obscene, offensive, hateful, inflammatory or defamatory of any person;
• promote any discrimination based on race, sex, religion, nationality, disability, sexual orientation or age;
• infringe any copyright, database right, trade mark or any other right of any other person;
• be threatening, abuse or invade another’s privacy, or cause annoyance, inconvenience or needless anxiety;
• be likely to harass, upset, embarrass alarm or annoy any other person;
• be used to impersonate any person, or to misrepresent your identity or affiliation with any person;
• give the impression that they emanate from us, if this is not the case; or
• advocate, promote or assist any unlawful act such as (by way of example only) copyright infringement or computer misuse.
We will determine, in our discretion, whether there has been a breach of these Terms of Use through your use of the health unlocked Site. When a breach of these Terms of Use has occurred, we may take such action as we deem appropriate, including, for example, withdrawing your right to use the Site; removing any posting or material you have uploaded; taking legal action against you; or disclosing such information to law enforcement authorities as we reasonably feel is necessary.
If you need further assistant please contact Catherine Lewis catherine.lewis@alstrom.org.uk or call 01803 613117.
