Community Rules and Privacy Policy

Part 1: Community rules

The forum is an online community for people living with or affected by MND to share experiences and support one another.

It is important to us that the forum remains a safe, supportive and open environment, and in order to do so we have developed a set of community rules which all forum users are required to follow.

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

1. Definitions

1.1 "Forum" is the MND Association forum 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 "Content" refers to any text, photograph or other image presented on this site to users by either the MND Association or users and includes Contributions.

1.4 "Contributions" includes any material, comments or information that users of the Forum contribute either to the public Forum or in email messages to other members of the Forum.

2. Information about us

The Forum 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. Purpose of the forum

3.1 The purpose of the Forum is to provide a safe area for people affected by motor neurone disease (MND) to share experiences and support each other with the challenges of living with MND.

3.2 You must register with the Forum in order to post Contributions. The Content of the Forum is freely available to the public, except for the parts that are solely restricted to members. The site will indicate those areas which are accessible to members only.

4. Accessing the forum 

4.1 You must be 18 or over to use or view the Forum. If you are under the age of 18 you can access support and information through our Young Connect service Young Connect Service.

4.2 Participation in, and use of the Forum is at your own risk.

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

4.4 We may restrict access to some or all of the Forum without notice for any reason and at any time.

4.5 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 any user identification code or password 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.

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

5. Intellectual Property Rights

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

5.2 By submitting a Contribution to the Forum 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 Forum 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 Forum.

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

6. Reliance on information posted

6.1 The material and information made available on the Forum 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 Forum and will remove Content which it considers to be in breach of these Rules. However the Forum 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 Forum.

6.5 The Forum 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 Please do not reveal any personal information about yourself or anyone else on the Forum (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 Forum and in the interests of protecting your privacy, the MND Association will remove any personal information that you disclose in an area on the forum which is visible to the public.

7. Prohibited uses

7.1 You may use the Forum 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 members of the Forum 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 Forum 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 Forum, or any equipment or network on which the Forum is stored;

7.1.8 to send messages containing personal contact details (web addresses, emails, phone numbers, fax numbers or postal addresses) unless they are posted on the private messaging area of the Forum or have the prior written consent of the MND Association or the individual whom the data belongs to.

7.2 You agree to treat as confidential all information made available on the Forum by other members of the Forum 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. Interactive services

8.1 We may from time to time provide interactive services on the Forum, including, comments or message to message email (the " Interactive Services") which enable you to make Contributions;

8.2 Any Contribution you make must be:

8.2.1 accurate; and

8.2.2 genuinely held (where they state opinions);

8.3 Unless you include any personal information, your Contribution will be anonymous, other than your user name, which will always appear as part of your Contribution when 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. Moderation and notification of any breaches

9.1 We have the right, but no obligation, to remove, 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 Forum.

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

9.4 The forum operates a safeguarding policy, implemented by forum moderators. If you have a concern about another member of the forum please email For data protection purposes, we cannot share the response, action or outcome of this situation with any members of the care forum. The Forum 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.

9.5 The forum is moderated intermittently throughout the day, and any messages or reports will be responded to as soon as possible.

10. MND Connect

10.1 The Ask MND Connect thread is a dedicated area for members of the forum to ask questions about motor neurone disease to the MND Connect team. Whilst the team aim to respond as soon as possible, this area is monitored between the hours of 9am and 5pm, Monday to Friday. Posts added outside of these times will be acknowledged at the next available opportunity.

10.2 MND Connect may reply to a post within the thread. Alternatively if it is deemed more suitable, the team may make contact with the member via private message.

11. Suspension and termination

11.1 We will determine, at our discretion, whether there has been a breach of the community rules through your use of the Forum, and we reserve the right to take such action as we deem appropriate.

11.2 If the Community rules are breached, in most cases a warning will be issued. If a warning is ignored and a further breach occurs this may result in a temporary suspension or cooling-off period. Persistent or deliberate breaches of the community rules may result in a longer suspension or access to the forum being revoked altogether.

12. Our liability

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

12.2 Clause 12.1 does not purport to exclude any liability that cannot legally be excluded or limited.

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

13. Use of your contributions to forum

13.1 In accordance with Clause 5 of the Rules any Contribution you post or transmit to the Forum 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 Forum for any purpose whatsoever.

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

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

14. Links from the forum

14.1 Where the Forum 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.

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

15. Jurisdiction and applicable law

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.

16. Revisions

We may revise the Community rules at any time and without prior notice by amending this page and making members aware of the revision via a notice on the forum. Please check this page frequently so that you are aware of any changes we make. Your continued use of the Forum after amendments or a new set of Rules are posted constitutes your acceptance of these Rules as modified.


Part 2: Privacy policy

Our Privacy Policy explains how we collect and use the information you give us across all of our channels. You can read our privacy policy by clicking the link below. This link will open in a new window and links to our main website. Read our Privacy Policy