"Guidelines" refers to the LuPUS Message Board rules, which can be found in the "What is the LuPUS Message Board" forum. The registered Member or Visitor ought to read all the posts at this URL.
"Member" means a registered member of the Website which houses the LuPUS MB and "Membership" shall be interpreted accordingly.
"We" or "Us" means LUpus Patients Understanding & Support (LUPUS), a non-profit organisation for individuals-affected-by-systemic lupus erythematosus, lupus variant conditions and the antiphospholipid antibody (Hughes) syndrome. We are a Member of the National Council of Voluntary Organisations in the UK located at this URL: http://www.ncvo-vol.org.uk/.
We are also Members of HONcode. HONcode was founded to encourage the dissemination of quality health information for patients and professionals and the general public, and to facilitate access to the latest and most relevant medical data through the use of the internet. The HONcode certification is an ethical standard aimed at offering quality health information. It demonstrates the intent of a website to publish transparent information. The transparency of the website will improve the usefulness and objectivity of the information and the publishing of correct data. The HONcode is a code of ethics that guides site managers in setting up a minimum set of mechanisms to provide quality, objective and transparent medical information tailored to the needs of the audience. Please see here:
"You" means you, the user of the Website and "Your" and "Yourself" shall be interpreted accordingly.
APPLICATION AND ACCEPTANCE
These Terms are important and apply where You choose to register as a Member of the LuPUS Message Board. Please read these Terms carefully before registering on the Website as a Member. By clicking "Accept" to register You will be deemed to have consented to these Terms. If You do not agree to these Terms, then You SHOULD NOT register as a Member.
We reserve the right, at Our sole discretion, to change or update these Terms from time to time without further notice, subject to Your termination right as set out below. It is therefore Your responsibility to check these Terms regularly for any changes. We will post the last date of any change to these Terms at the top of this page. Your continued use of the Website after any such changes constitutes Your acceptance of the new terms. If You do not agree to abide by these Terms or any future terms You should not continue to use this Website.
You must be 18 years or over to register as a Member. If We discover or have any reason to suspect that You are not over 18 years of age, then We reserve Our right to suspend or terminate Your Membership to the Website immediately and without notice. We strongly believe that a medical diagnosis of systemic lupus, lupus variant conditions and the antiphospholipid antibody (Hughes) syndrome can feel traumatic and on that basis, children and young people, need the support of their parents or caregivers. While those of 16 years might be considered responsible in other areas, we take the view that no matter how mature, we all need a network of support to help us understand what is happening to our bodies and to make informed decisions. Reading some information or reading about others, might lead to further distress. If You are under 18 years, there is a special forum for children and young people. However, we would need proof that You have parental or caregiver permission and therefore, You need to Email the Director.
YOUR PROMISES TO US
You confirm that:
You are over 18 years of age;
All information and details provided by You to Us (including on registration as a Member) are true, accurate and up to date in all respects and at all times; and
You will comply with these Terms including, without limitation, the restrictions relating to acceptable use set out in the Code of Conduct section below and in the LuPUS rules or Guidelines.
You agree to compensate Us from any claim or damages (including any legal fees in relation to such claim or damages) made by a third party in respect of any matter in relation to or arising from Your use and Membership or arising from any breach or suspected breach of these Terms by You or Your violation of any law or the rights of any third party.
Upon registration as a Member, You will select a password and Display name and Login name that You can use to access Your profile and to log on to the Members' area of the Website, that is, to Sign In, in order to access the private forums. You are responsible for maintaining the confidentiality of Your password and Member name and are responsible for all activities that occur under them. We do not have the means to check the identity of people using the Members' area of the Website and will not be liable where Your password or Member name are used by someone else. You agree to notify Us immediately of any unauthorised use of Your password or Member name or any other breach of security of which You become aware. You agree to be fully responsible for all use of Your account and for any actions that take place using Your account and to maintain and promptly update any information You provide to Us, to keep it accurate, current and complete.
In order to maintain Your anonymity, We strongly recommend that, when You use the Website, You avoid using or disclosing in any way Your real name and/or any personal details by which You could be identified (including Your address, telephone numbers, e-mail addresses etc.) or the names or personal details of others. We recommend that You identify Yourself only by Your Member name. In addition, We strongly advise You not to include Your real first name in Your username.
You are solely responsible for the content You post or create on the Website including any messages or posts in the LuPUS MB forum. We respect the intellectual property rights of others and We prohibit Members from uploading, posting or otherwise transmitting on the Website any materials that violate another party's intellectual property rights. When We receive notification of a potential copyright infringement, We will promptly remove or disable access to the allegedly infringing material and terminate the accounts of repeat infringers. We may remove content from the Website for any reason or no reason, including without limitation content that in Our sole judgment violates these Terms, that might be offensive, defamatory, illegal, or that might violate the rights, harm, or threaten the safety of other Members, or other people in general or content that has generated a complaint which warrants further investigation. You may not post, transmit, or share content on the Website that You did not create or that You do not have permission to post. You understand and agree that We are not obliged to review the Website for copyright infringement and are not responsible for content posted by third parties without Our knowledge.
When You post content to the Website, You authorise and direct Us to make such copies thereof as We deem necessary in order to facilitate the posting and storage of such content. By posting content to any part of the Website, You grant, and You promise that You have the right to grant, to Us an irrevocable, perpetual, non-exclusive, transferable, fully paid, worldwide licence (with the right to sublicense) to use, copy, publicly perform, publicly display, reformat, translate, excerpt (in whole or in part) and distribute such content for any purpose on or in connection with the Website or the promotion thereof, to prepare derivative works of, or incorporate into other works, such content. You may remove Your content from the Website at any time by emailing us at Email the Director.
All content made available on the Website, including but not limited to designs, text, graphics, pictures, video, information, applications, software, music, sound and other files, and their selection and arrangement, are Our property or are licensed to Us with all rights reserved. Such content may not be modified, copied, distributed, framed, reproduced, republished, downloaded, displayed, posted, transmitted, or sold in any form or by any means, in whole or in part, without Our prior written consent. This excludes Your own content that You legally post to the Website.
Subject to the above, You may download insubstantial excerpts of Our content to Your hard disk for the purpose of viewing it provided that no more than one copy of any information is made.
Any use of Our content other than as specifically authorised in these Terms, without Our prior written consent, is strictly prohibited and will terminate the licence granted here. Such unauthorised use may also violate applicable laws including without limitation copyright and trademark laws. This licence is revocable at Our sole discretion, at any time and without notice.
Our Content is provided on an "as is" and "as available" basis. LUpus Patients Understanding & Support (LUPUS), including the LuPUS Message Board, gives no warranty of any kind in relation to our Content, or our RSS Feed, when this becomes available. and We disclaim all implied warranties, including, but not limited to, satisfactory quality, fitness for purpose, non-infringement, compatibility and accuracy.
LUpus Patients Understanding & Support (LUPUS) contains medical and pharmaceutical news, and data, supplied for general information purposes only. LUpus Patients Understanding & Support (LUPUS) consists of two websites that are developed for healthcare professionals and the general public.The materials contained within these websites do not constitute medical or pharmaceutical advice, which should be sought from qualified medical and pharmaceutical advisers. We do not answer any medical questions of any kind, in any format, nor any questions relating to medications. Any views expressed by third parties in the LuPUS Message Board do not reflect the opinions, in any way, of LUpus Patients Understanding & Support (LUPUS). Descriptions of, or references to, products or publications does not imply endorsement of that product or publication.
We are not responsible for any mistakes or deficiencies on LUpus Patients Understanding & Support (LUPUS) or the LuPUS Message Board. We cannot be held liable for any breakdowns or faults on our site.
THIRD PARTY WEBSITES AND THEIR CONTENT
Please be aware that the Website may link to other Websites that may be accessed by You through the Website. Such third party Websites are not investigated, monitored or checked for accuracy, appropriateness, or completeness by Us, and We are not responsible for any Websites You may access via a recommendation or suggestion on the Website. Inclusion of, linking to or permitting the use or installation of any third party Website or any third party applications, software or content does not imply approval or endorsement by Us. If You decide to leave the Website and access a third party Website or to use or install any third party applications, software or content, You do so at Your own risk. We are not responsible for the data policies, content or security of these linked Websites.
CODE OF CONDUCT
We support the free flow of information and ideas over the Internet and do not actively monitor use of the Website, under normal circumstances, although We reserve the right to do so. However, We do seek to balance this aim with Our obligations to other Members and at law. We therefore require that You do not:
say or do anything that would cause annoyance, inconvenience, harassment or needless anxiety to others;
advertise or promote third party or Your own products or services including by way of the distribution of spam mail;
use foul, threatening or offensive language including, without limitation, racist, sexist, ageist, homophobic or sexually explicit language where inappropriate;
make insulting remarks to or about other Members or any person generally;
distribute illegal, copyright infringing, indecent or offensive material or any messages or content that may incite disorder or encourage illegal activities or that causes or may cause harm to minors;
impersonate another person or Member or a moderator;
transfer files that contain viruses, trojans or other harmful programs;
use the Website to conduct any fraudulent activity including any "pyramid scheme"; "ponzi scheme" or "chain letter"; or
access or attempt to access the accounts of other Members or to penetrate or attempt to penetrate the Website security measures.
We may take any or all of the following actions at Our sole discretion:
remove any Member profile (including photographs) or other material that We deem inappropriate or We suspect to be illegal, may subject Us to liability or which may violate these Terms or where We are required to do so by law;
issue Members with verbal or written warnings (Warn Status) and take such further action as We deem appropriate if such warnings are not heeded;
suspend or terminate a Member's access to certain area of the Website or a Member's account without notice at any time;
inform the appropriate authorities and provide them with information regarding any suspected illegal activity; or
bring legal action against a Member in relation to any breach of these Terms or any illegal or suspected illegal activity.
We will determine what action is appropriate to be taken against a Member on a case by case basis.
You are solely responsible for Your interactions with other Members. We reserve the right, but have no obligation, to monitor disputes between You and other Members.
Without limiting any of the foregoing, You also agree to abide by the LuPUS MB rules and Guidelines that provide further information regarding the authorised conduct of Members while on the Website and which form part of these Terms.
You acknowledge that We may be required by law or regulation to access, monitor, store or copy material sent by or to Members without further notice to You.
The material displayed on LUpus Patients Understanding & Support (LUPUS), including, but not limited to, the News and Content, is provided without any guarantees, conditions or warranties as to its accuracy. To the extent permitted by law, we and third parties connected to us hereby expressly exclude:
All conditions, warranties and other terms which might otherwise be implied by statute, common law or the law of equity;
Any liability for any direct, indirect or consequential loss or damage incurred by any user in connection with LUpus Patients Understanding & Support (LUPUS) or in connection with the use, inability to use, or results of the use of LUpus Patients Understanding & Support (LUPUS), any websites linked to it and any materials posted on it, including, without limitation any liability for loss of income or revenue; loss of business; loss of profits or contracts; loss of anticipated savings; loss of data; loss of goodwill; wasted management or office time; and for any other loss or damage of any kind, however arising and whether caused by tort (including negligence), breach of contract or otherwise, even if foreseeable.
This does not affect our liability for death or personal injury arising from our negligence, nor our liability for fraudulent misrepresentation or misrepresentation as to a fundamental matter, nor any other liability which cannot be excluded or limited under applicable law.
All title, ownership rights and intellectual property rights of LUpus Patients Understanding & Support (LUPUS) shall remain the property of LUpus Patients Understanding & Support (LUPUS).
You agree to indemnify, hold harmless and defend LUpus Patients Understanding & Support (LUPUS) in respect of all damages, costs and expenses, including reasonable legal fees and litigation expenses, arising out of, or as a result of, any breach of this Agreement, or otherwise, in connection with your use of the Content in LUpus Patients Understanding & Support (LUPUS) and the LuPUS Message Board.
You agree that LUpus Patients Understanding & Support (LUPUS) and the LuPUS Message Board, cannot be held liable and/or accountable for any problems or loss arising from any widgets, gadgets, software, devices and any such application regardless of whether LUpus Patients Understanding & Support (LUPUS), including the LuPUS Message Board, has added input into such application.
All of the terms and conditions form the Agreement and each clause operates separately in itself and survives independently of the others.
This Agreement shall be governed by, construed and take effect in accordance with English law. English courts shall have exclusive jurisdiction to settle any claim or dispute which may arise out of, or in connection with, this Agreement.
You can cancel Your Membership by Emailing the Director.
We may terminate Your membership, delete Your profile and any content or information that You have posted on the Website and/or prohibit You from using or accessing the Website for any reason, or no reason, at any time in Our sole discretion, with or without notice, including without limitation if We believe that You are under 18, unless you have parental or caregiver permission, which necessitates contact with Us, so we can determine whether a minor, ie someone under 18 years, has parental or caregiver permission. We believe strongly that dealing with a chronic disease is stressful and that young people need the support of their caregivers.
OUR LEGAL OBLIGATIONS AND LIMITS ON LIABILITY
While We have taken every care in compiling the LuPUS Message Board Website, You acknowledge that the information contained on this Website does not constitute medical or professional advice. This Website is provided for information purposes only and all content and services on this Website are provided on an "as is" and "as available" basis. We do not make any promises to You in respect of the Website or its content, including, without limitation, information provided by or regarding other Members.
Any decision made or action taken by You on the basis of information provided on or via the Website is at Your sole discretion and risk. You should seek appropriate professional advice before acting (or not acting) in reliance on any information contained in or accessed through this Website. So far as is permissible by law, We do not accept any liability to any person relating to the use of this Website.
Whilst We will use all reasonable endeavours to correct any errors or omissions in Our content as soon as practicable once they have been brought to Our attention, We do not promise that the Website will be available uninterrupted and in a fully operating condition nor that the information on and provided via the Website will be free from errors or omissions. We shall not be liable for any failure or suspension of the Website, or for termination of access to the Website or access to Website content.
Due to the fact that many technical aspects of the Website and the content provided is supplied by or otherwise dependent on third parties, such as our web hosts, We are not responsible for the accuracy, suitability, reliability, completeness, performance, satisfactory quality, fitness for a particular purpose, or freedom from viruses, or other harmful programs of the content contained in or accessed through this Website.
We will not be liable for indirect losses which are a side effect of the main loss or damage and which are not reasonably foreseeable by You and Us at the time of entering into these Terms, for example loss of profits or loss of opportunity.
If any part of these Terms is disallowed or found to be ineffective by any court or regulator, the other provisions shall continue to apply.
In the event of any dispute between You and Us concerning these Terms, the relevant laws of England and Wales will apply. If You wish to take court proceedings against Us You must do so within the courts of England and Wales.
COMPLAINTS AND FEEDBACK
If You have any complaints about another Member or any aspect of the Website or if You have any questions or would otherwise like to provide any other feedback, then You can contact Us by Emailing the Director.
LUpus Patients Understanding & Support (LUPUS) will only collect, process and store information we have openly collected from you or with your consent, in accordance with data protection laws. Your details will be held only by LUpus Patients Understanding & Support (LUPUS) and will not be made available to any third party, except where otherwise stated. For example, should we develop secure online donation pages you will go through to a third party in order to donate. Currently, when you Register at http://www.lupus-support.org.uk
, we will email you with information and then delete your email address from our emails which means that your email address is not stored on any computer.
When you Register with the LuPUS Message Board here, on a separate website, your details are held in a password protected database online where our data is stored by our webhost. Only the Admin has access to this database. Your details are not held on any computer. These registration details contain minimal information such as Full Name, Country, your Display Name, Login Name and chosen Password. All these details can be updated. Please do not share your password with anyone else. You can access and update information on LUpus Patients Understanding & Support (LUPUS) at any time on the LuPUS Message Board, after you login.
If you send information to LUpus Patients Understanding & Support (LUPUS) via email, please be aware that that LUpus Patients Understanding & Support (LUPUS) cannot guarantee its security during transit. These emails remain confidential and are between you and the Director of LUpus Patients Understanding & Support (LUPUS). Should you wish to use a secure email system, you will need to implement the system yourself and then contact Us so we can use the same secure email system to exchange emails.
TERMS AND CONDITIONS SUMMARY
Access to and use of the LUpus Patients Understanding & Support (LUPUS) website is provided by LUpus Patients Understanding & Support (LUPUS) subject to the following Terms and conditions:
By using the LUpus Patients Understanding & Support (LUPUS) website you agree to be legally bound by these Terms and Conditions, which shall take effect immediately on your first use of the LUpus Patients Understanding & Support (LUPUS) website.
LUpus Patients Understanding & Support (LUPUS) may change these Terms and conditions at any time by posting changes online. Please review these Terms and Conditions regularly. Use of the LUpus Patients Understanding & Support (LUPUS) site after changes to the Terms and Conditions are posted means you agree to be legally bound by the updated Terms and Conditions.
All rights reserved. All materials are copyright © 20011 LUpus Patients Understanding & Support (LUPUS). The LUpus Patients Understanding & Support (LUPUS) name, logo are trademarks of LUpus Patients Understanding & Support (LUPUS).
LUpus Patients Understanding & Support (LUPUS) endeavours to ensure the content of this website is accurate and up to date but does not accept any liability for error or omission.
LUpus Patients Understanding & Support (LUPUS) is not a medical organisation and provides information rather than advice. LUpus Patients Understanding & Support (LUPUS) does not accept liability for any inconvenience, loss or damage arising from the use or inability to use any of the information on this website.
LUpus Patients Understanding & Support (LUPUS) takes no responsibility for the content of external websites and any such links should not be taken as an endorsement of any kind.
LUpus Patients Understanding & Support (LUPUS) cannot offer emergency psychological support. If You have suicidal ideation, you must contact your doctor immediately. You can also seek advice from organisations such as The Samaritans.
ADVERTISING AND FUNDING POLICY
At this time, LUpus Patients Understanding & Support (LUPUS) receives no funding. LUpus Patients Understanding & Support (LUPUS) does not advertise or endorse any product unless explicitly stated. The Medical News forum, may contain reference to products that are not subject to medical standards or medical approval based on evidence. LUpus Patients Understanding & Support (LUPUS) will attempt to provide an authoritative source in relation to the drug, medication or product. Medication or products stated do not imply either the approval by, or opinion of LUpus Patients Understanding & Support (LUPUS). In all circumstances, the individual must seek medical help from their own physician and not rely on third party opinion and this includes LUpus Patients Understanding & Support (LUPUS). We do not charge a subscription for our services. We rely on donations. If you feel LUpus Patients Understanding & Support (LUPUS) is helpful, please consider making a donation, no matter how small. The Director is not responsible for donations and has no knowledge as to who donates. The responsibility is with the Financial Director. Donations are needed to pay for webhosting. Neither the Director, the Financial Director or Moderators are paid or receive remuneration. All work, including the websites design, maintenance and moderation, is voluntary. To make a donation, please go to donate here:
PSYCHOLOGICAL SUPPORT SERVICES
Currently, we offer psychological support online via the LuPUS Message Board. One of the Moderators, who is also the Director of LUpus Patients Understanding & Support (LUPUS), is a qualified psychotherapist and counsellor. Please note: We do not offer counselling, psychotherapy, therapy, or "e-therapy" on the LuPUS MB. Should an individual seek counselling or psychotherapy, please contact the Director. or if registered, PM Admin. Even though We offer psychological support, You must be aware that We do not and cannot offer emergency services.
If you are feeling suicidal, You must contact your doctor as soon as possible. In addition, you can find help by going to the Samaritans. If You live in the UK, You can phone the Samaritans on: 08457 90 90 90. In the ROI: 1850 60 90 90. 8457 90 90 90
The information contained in this web site is not intended to replace the services of a trained health professional or to substitute for medical advice of physicians. The user should regularly consult a physician in all matters relating to his or her health, particularly in respect to any symptoms that may require a diagnosis or medical attention. The L U P U S websites make no representation or warranties with respect to any treatment, action, or application of medication or preparation by any person following the information offered or provided within or through this web site. The L U P U S websites or Director will not be liable for any direct, indirect, consequential or exemplary or any other damages arising therefrom. In all medical matters, the recommendation is to seek the advice of one's own physician.
You agree to read and adhere to the Guidelines in the What is the LuPUS MB? forum.
We thank you for joining us and sincerely hope you will find a safe-enough base to talk and invite you to take an active part in the development of the LuPUS Message Board as this is your LuPUS MB.