Rules and Privacy Policy

Terms and Conditions for the MND/ALS Research and Care Community Blog, (ReCCoB)


Please read the Rules below carefully before you start to use the Blog. By using the Blog, you agree to these Rules. If you do not agree, please stop using the Blog.


1.1 “The Blog (ReCCoB)” is the MND/ALS Research and Care Community Blog and refers to all internet pages in the domain.

1.2  “MND Association” includes any person or organisation involved in any part of the design, development, response-handling, marketing, promotion or other similar aspects of this site.

1.3 “User” refers to any person who reads, or contributes to the blog.

1.4 “Content” refers to any text, image, audio or video presented on this site to users by either the MND Association or users and includes Contributions.

1.5 “Contributions” includes any material, comments or information that users of the Blog contribute to the Blog.


2. The Blog is operated by Motor Neurone Disease Association (MND Association). We are a charity registered in England and Wales under charity number 294354 and have our registered office at David Niven House, 10-15 Notre Dame Mews, Northampton NN1 2BG.


3.1 The purpose of Blog is to encourage the sharing of knowledge about current avenues of care and research from around the world written by professionals, for professionals.

3.2 You must register with the Blog in order to post Contributions. The Content of the Blog is freely available to the public.

3.3 Blog is designed primarily for professionals: researchers; clinicians and healthcare professionals. For news from the International Symposium on ALS/MND tailored for people affected by MND please visit the MND Association’s research blog at


4.1 You must be 18 or over to contribute blog posts.

4.2 Use of and contributing to the Blog is at your own risk.

4.3 Your right to access the Blog is subject to your compliance with these Rules.

4.4 We may restrict access to the Blog without notice for any reason and at any time.

4.5 If you become a ReCCoB blogger, we will give you a username and password as part of our security procedures. You must treat that information as confidential, and you must not disclose it to any other person or organisation. We have the right to disable your access to contributing to Blog if in our opinion you have breached any of these Rules.

4.6 You must notify us immediately if you suspect that your password becomes known to any unauthorised user by emailing us at

4.7 We do not provide any guarantee that the functions or materials accessible from or contained in the Blog will be uninterrupted or error free or that the Blog is free of viruses or faults.

4.8 All contributions need to be written English, any contributions that are not written in English will be removed.


5.1 MND Association is the owner or the licensee of all intellectual property rights in the Blog.

5.2 By submitting a Contribution to the Blog you agree to grant the MND Association a non-exclusive worldwide royalty-free perpetual non-revocable licence to use your Contributions. Although you will still own the copyright in your Contribution, MND Association will have the right to distribute, adapt, modify, display, reproduce and transmit such information in any and all media without any duty to account to you. You also grant the MND Association the right to grant licences to users of the Blog to view and copy such information for personal use and to grant any other sub-licences.

5.3 You agree that you will not submit any Contribution protected by copyright, trade mark, patent, trade secret, moral right, or other intellectual property, personal, contractual, proprietary or other right owned by a third party without the express permission of the owner of the respective right. You are solely responsible for any damage resulting from your failure to obtain such permission or from any other harm resulting from any Contribution that you submit.

5.4 If you are not in a position to grant the licence described in clause 5.2, or the assurance in clause 5.3 please do not submit any Contributions to the Blog.

5.5 You must not publish or use for commercial purposes any part of the materials on the Blog without obtaining written consent from us.


6.1 The material and information made available on the Blog is provided without any guarantees, conditions or warranties as to its accuracy.

6.2 All views and information, whether publicly posted or privately transmitted are individual and not the views, policy or advice of the MND Association. You understand and acknowledge that Content is the sole responsibility of the person from whom such Content originated and not the MND Association.

6.3 Any reference to third party organisations, their product/s or service/s does not imply endorsement by the MND Association. The MND Association reserves the right to remove such references but has no obligation to do this.

6.4 The MND Association moderates the Content posted via the Blog and will remove Content which it considers to be in breach of these Rules. However the Blog is not moderated at all times. As a result, the MND Association cannot guarantee and makes no representations as to the accuracy, integrity, timeliness or quality of such Content. Please see section 9 of these Rules for more information on moderation of the Blog.

6.5 The Blog is not a substitute for professional advice. You should consult your doctor, or other relevant professional, before making any decisions that could affect you or others.

6.6 We advise that you do not reveal any personal information about yourself or anyone else on the Blog (for example: telephone number, postal address, home address or email address or any other details that would allow you to be personally identified). In the course of moderating the Blog and in the interests of protecting your privacy, the MND Association reserves the right to remove any personal information that you disclose on or using the Blog.


7.1 You may use the Blog only for lawful purposes. You may not use it:

7.1.1 in any way that breaches any applicable local, national or international law or regulation;

7.1.2 to transmit, or procure the sending of, any unsolicited or unauthorised advertising or promotional material or any other form of similar solicitation (including spam or junk messages) to other contributors of the Blog or anyone else;

7.1.3 to knowingly transmit any data, send or upload any material that contains viruses, Trojan horses, worms, time-bombs, keystroke loggers, spyware, adware or any other harmful programs or similar computer code designed to adversely affect the operation of any computer software or hardware;

7.1.4 in any way which is likely to, or does, damage our reputation;

7.1.5 to reproduce, duplicate, copy or re-sell any part of the Blog in contravention of these Rules;

7.1.6 to gather information for surveys and research studies, or similar, unless prior permission has been given by the MND Association;

7.1.7 to access without authority, interfere with, alter, damage or disrupt any part of the Blog, or any equipment or network on which the Blog is stored;

7.1.8 to send messages containing personal contact details (web addresses, emails, phone numbers, fax numbers or postal addresses) unless you have the prior written consent of the MND Association.

7.2 You agree to treat as confidential all information made available on the Blog by other contributors of the Blog that is not legitimately available to the public elsewhere, and not to disclose such information to any others without the prior written consent of the member in question.


8.1 Any Contribution you make must be:

8.2.accurate; and genuinely held (where they state opinions);

8.3 unless you include any personal information, your Contribution to comments will be anonymous, your user name will always appear as part of your Contribution when a blog post is published.

8.4 Contributions must not:

8.4.1 contain any material which is defamatory, libellous obscene, offensive, vulgar, sexually orientated, hateful or inflammatory;

8.4.2 infringe any right including (but not limited to) copyright, database right or trade mark of any other person;

8.4.3 be threatening, abusive or invade another’s privacy, or cause annoyance, inconvenience or needless anxiety;

8.4.4 violate good morals and practice;

8.4.5 be used to impersonate any person, or to misrepresent your identity or affiliation with any person;

8.4.6 give the impression that they emanate from us, if this is not the case; or

8.4.7 breach these Rules and particularly the prohibited uses under clause 7.


9.1 We have the right, but no obligation, to edit, move or remove any Content of any kind for any reason.

9.2 We are not obliged to enter into any correspondence regarding the moderation of Content on the Blog.

9.3 If you are aware of any breach of these Rules, or other misuse of the Blog, please notify as soon as possible by sending us email to:


10.1 We will determine, in our discretion, whether there has been a breach of these Rules through your use of the Blog. When a breach of these Rules has occurred, we may take such action as we deem appropriate including but not limited to:

10.1.1 immediate, temporary or permanent withdrawal of your right to contribute to the Blog;

10.1.2 immediate, temporary or permanent removal of any posting or material uploaded by you to the Blog; or

10.1.3 legal proceedings against you for reimbursement of all costs on an indemnity basis resulting from the breach.


11.1 We are not responsible for any loss or damage that you incur in connection with the Blog; in particular we are not responsible for any misuse of your information by other contributors of the Blog or any member of the public who abuses his or her access to the Blog.

11.2 Clause 11.1 does not purport to exclude any liability that cannot legally be excluded or limited.

11.3 You shall indemnify us against all losses and/or liabilities incurred by us as a result of your breach of these Rules.


12.1 In accordance with Clause 5 of the Rules any Contribution you post or transmit to the Blog may be used by us for any purpose, including but not limited to reproduction, disclosure, transmission, publication and broadcasting. We are free to use any ideas, concepts, know-how, or techniques contained in any contribution or communication you send to the Blog for any purpose whatsoever.

12.2 You are wholly responsible for all Contributions posted on the Blog by you or any materials (including emails) sent by you in connection the Blog.

12.3 You grant other users of the Blog a non-exclusive licence to view the Contributions you post or upload to the Blog, subject to these Rules.

12.4  If content is reproduced from Blog for commercial purposes written consent from the MND Association is required. Within a reproduction, the Blog must be acknowledged as the source and clearly state the web address


13.1 Where the Blog contains links to websites and resources provided by third parties, these links are provided for your information only. We do not endorse and accept no responsibility for them or for any loss or damage that may arise from your use of them.

13.2 When you link to other organisations via the Blog, you are then subject to the rules and privacy policy (if any) of that organisation’s site.


14. These Rules shall be governed and construed in accordance with the laws of England and Wales and any disputes relating to these Rules shall be subject to the exclusive jurisdiction of the courts of England and Wales.


15. We may revise these Rules at any time and without prior notice by amending this page or posting a new set of Rules on the Blog. You are expected to check this page frequently so that you are aware of any changes we make. Your continued use of the Blog after amendments or a new set of Rules are posted constitutes your acceptance of these Rules as modified.


MND Association takes your privacy very seriously and we are committed to protecting your personal information. This policy explains how we collect and use the information you give us. If you have any questions please send an email to:


16. By providing us with your personal data, including sensitive personal data such as information about your health (including medical history), ethnicity, religion, political or religious opinions or criminal records, you consent to the collection and use of any information you provide in accordance with this privacy statement and the Rules.


17.1 MND Association will hold the information you provide on the Blog. For more information on us see our website:

17.2 Other contributors to the Blog and members of the public will also be able to see the information you make publicly available on the Blog. Other contributors (and the public viewing the Blog) are subject to the Rules but we cannot guarantee that they will comply with them.


18. We will obtain personal information from you when you register with us, or otherwise provide us or other contributors of the Blog with personal information. (We may also receive information about you from third parties from time to time.)


19.1 We will use your personal information to help you participate in the Blog, for administration purposes and to provide services that you have requested. If we wish to use your information for any other purpose we will not do so without first obtaining your consent to do so.

19.2 We will not share your information or send you information from or about other organisations without first obtaining your consent to do so.


20.1 We place great importance on the security of your personal information and we always try to take appropriate precautions to protect it.

20.2 Despite all of our precautions however, no data transmission over the internet can be guaranteed to be 100% secure. So, whilst we strive to protect your personal information, we cannot guarantee the security of any information which you disclose to us or other contributors of the Network and you must understand that you do so at your own risk.


21. If your personal details change, please help us to keep your information up to date by updating the details in your WordPress profile.