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Guidelines: What is the LuPUS MB?

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  • Admin

Members' Responsibilities

1. Members are expected to show respect towards other people, even though

they may have different views and beliefs.

2. Members are expected to be respectful towards those of different races,

countries, cultures and beliefs.

3. Members are expected to treat with respect and sensitivity all messages

posted. This includes treating what is read as confidential and not to be

discussed/disclosed outside the LuPUS MB. Members have a right to expect


4. Members are strongly advised not to disclose personal information, such as

addresses, telephone numbers or even email addresses. The Admin/Mods do not

accept responsibility for any personal disclosure. The Admin/Mods will not

disclose any personal information.

5. The Admin/Mods do not accept any responsibility for the content of the

posts. It is important for Members to read the Disclaimer referring to the

LuPUS MB and LUpus Patients Understanding & Support.

6. Members who spam, that is, who promote a service or product in which they

have a commercial interest, will have their post deleted and issued with a

warning. Any future spam-related posts will lead to an immediate suspension

or ban.

7. Any Member who deliberately "flames", that is, writes a hostile,

attacking, aggressive or libellous post, will have their post amended, any

names removed, the post deleted in part or full by the Mods. A warning will

be given and any future posts which "flame" will result in that Member's

immediate suspension and/or ban. Attacks on anyone will not be tolerated.

8. Members are not allowed to promote personal websites or other websites

without notifying the Admin/Mods first, unless these refer to valid

organisations such as government sites, university or medical schools.

8. Please note: Members are advised to treat any information or content

posted with caution. Members are strongly advised to seek any medical

attention: diagnosis, prognosis, treatment plan from their own physician.

Members should never self-medicate, add or stop any medication without

discussing this with their own doctor. The LuPUS MB should not be seen as a

substitute for seeing one's own physician.

9. All Members are advised to read the LuPUS MB Guidelines. Any concerns or

problems, please contact either the Admin or the Mods.

The Admin and the Mods are here to help all Members. Please be aware that all

of us also have lupus, that this is voluntary work and that we also have

family and other commitments. We will try as far as possible to answer all

emails as quickly as possible.

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  • Admin

Notice for Members who are healthcare professionals, researchers or connected with any lupus organisation

LUpus Patients Understanding & Support takes seriously the issues of privacy and confidentiality. We subscribe to a code of ethics which means we will protect as far as humanly possible, our Members privacy and confidentiality. We do not disclose to any third party our Members and we consider reading posts in order to collect information for whatever person is in breach of our ethical stance.

Any Member who uses access to these forums in order to collect information or data will be in violation of our Guidelines and will be subject to suspension or a ban. Any Member whose sole purpose is to find out the private thoughts or feelings of others as a result of membership of a lupus organisation will be in violation of our Guidelines and code of ethics and will be subject to suspension and ban.

Any Member who wishes to research, must disclose their intention by contacting the Admin. In the past, it has been possible to aid a researcher, but this demands the disclosure of that Member, a detailed explanation of their research proposal and whether it conforms to strict ethical guidelines of the university/medical school/institution or organisation. Any research that uses information as a result of being a Member and without disclosing their activity, will be considered as having violated the Guidelines and will be in breach of respecting the privacy and confidentiality of our Members.


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