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AMNET does not endorse or specifically recommend any particular commercial product, medical practitioner, management or treatment programme or medical institution. The views expressed by contributors should not be taken to be those of AMNET unless this is expressly stated. Any advertisements are not endorsed by AMNET.

This website provides links to other websites that we believe may be helpful to people with a diagnosis of a a skull base tumour, including acoustic neuroma (vestibular schwannoma) and meningioma. However, we have no control over these websites and are not responsible for their content. This disclaimer and our privacy policy  does not extend to your use of these websites. You are advised to read the privacy policy or statement of other websites prior to using them.

In order to alleviate any level of anxiety the content of this and other websites has the potential to cause, it is recommended that patients discuss their particular circumstances with their specialist medical team.


Privacy Policy

Privacy Policy

This is the privacy notice of AMNET: The Acoustic Neuroma and Meningioma Network. Referred to throughout as ‘we’, ‘our’, or ‘us’.


AMNET does not have a registered headquarters address. Any postal correspondence is to be directed to AMNET, c/o 4 Hadleigh Drive, Lowestoft, Suffolk NR32 3EE.




This notice describes how we collect, store, transfer and use personal data. It tells you about your privacy rights and how the law protects you.


In the context of the law and this notice, ‘personal data’ is information that clearly identifies you as an individual or which could be used to identify you if combined with other information. Acting in any way on personal data is referred to as ‘processing’.


This notice applies to personal data collected through our website and through social media platforms and email correspondence.


Except as set out below, we do not share, or sell, or disclose to a third party, any information collected through our website.


Data Protection Officer


We have appointed a data protection officer (‘DPO’) who is responsible for ensuring that our privacy policy is followed.

If you have any questions about how we process your personal data, including any requests to exercise your legal rights, please contact our DPO, Stuart Cooke, at


Personal data we process


1. How we obtain personal data:

The information we process about you includes information:


  • you have directly provided to us

  • that we gather from third party databases and service providers

  • as a result of monitoring how you use our website or our services


2. Types of personal data we collect directly


When you use our website, our services or contact us through it, via email or over the phone we ask you to provide personal data. This can be categorised into the following groups:


  • personal identifiers, such as your first and last names, your title and your date of birth

  • contact information, such as your email address, your telephone number and your postal addresses for billing, delivery and communication

  • account information including login details, username and password

  • records of communication between us including messages sent through our website, email messages and telephone conversations

  • marketing preferences that tell us what types of marketing you would like to receive

  • payment information, such as bank account details and payment references


3. Types of personal data we collect from third parties


We confirm some of the information you provide to us directly using data from other sources. We also add to the information we hold about you, sometimes to remove the need for you to provide it to us and sometimes in order to be able to assess the quality of the services on offer.


The additional information we collect can be categorised as follows:


  • information that confirms your identity

  • information that confirms your contact information


Types of personal data we collect from your use of our services


4. By using our website or social media and related services, we process:


  • your username and password and other information used to access our website and our services

  • information you contribute to our community, including reviews
    your replies to polls and surveys

  • technical information about the hardware and the software you use to access our website and use our services, including your Internet Protocol (IP) address, your browser type and version and your device’s operating system

  • usage information, including the frequency you use our services, the pages of our website that you visit, whether you receive messages from us and whether you reply to those messages

  • transaction information that includes the details of the memberships and donations you have bought from us/donated to us and payments made to us for those services

  • your preferences to receive marketing from us; how you wish to communicate with us; and responses and actions in relation to your use of our services.

5. Our use of aggregated information


We may aggregate anonymous information such as statistical or demographic data for any purpose. Anonymous information is that which does not identify you as an individual. Aggregated information may be derived from your personal data but is not considered as such in law because it does not reveal your identity.


For example, we may aggregate usage information to assess whether a feature of our website is useful.


However, if we combine or connect aggregated information with your personal data so that it can identify you in any way, we treat the combined information as personal data, and it will be used in accordance with this privacy notice.


6. Special personal data


Special personal data is data about your race or ethnicity, religious or philosophical beliefs, sex life, sexual orientation, political opinions, trade union membership, information about your health and genetic and biometric data.


It also includes information about criminal convictions and offences.


While assumptions can be made through your communications and memberships, we do not purposefully collect or store any special personal data about you. We ask you do not provide any such data to us unnecessarily at any time.


7. If you do not provide personal data we need


Where we need to collect personal data by law, or under the terms of a contract we have with you, and you fail to provide that data when requested, we may not be able to perform that contract.

In that case, we may have to stop providing a service to you. If so, we will notify you of this at the time.


The basis on which we process information about you


The law requires us to determine under which of six defined bases we process different categories of your personal data, and to notify you of the basis for each category.


If a basis on which we process your personal data is no longer relevant then we shall immediately stop processing your data.


If the basis changes then if required by law we shall notify you of the change and of any new basis under which we have determined that we can continue to process your information.


8. Information we process with your consent


Through certain actions when otherwise there is no contractual relationship between us, such as when you browse our website or ask us to provide you more information about our business, including using our contact form, our products and services, you provide your consent to us to process information that may be personal data.


Wherever possible, we aim to obtain your explicit consent to process this information, for example, we ask you to agree to our use of non-essential cookies when you access our website.


We continue to process your information on this basis until you withdraw your consent or it can be reasonably assumed that your consent no longer exists.


You may withdraw your consent at any time by instructing us at However, if you do so, you may not be able to use our website or our services further.


We aim to obtain and keep your consent to process your information. However, while we take your consent into account in decisions about whether or not to process your personal data, the withdrawal of your consent does not necessarily prevent us from continuing to process it. The law may allow us to continue to process your personal data, provided that there is another basis on which we may do so. For example, we may have a legal obligation to do so.


9. Information we process because we have a contractual obligation with you

When you create an account on our website, register as a member or make a donation to us, or otherwise agree to our terms and conditions, a contract is formed between you and us.

In order to carry out our obligations under that contract we must process the information you give us. Some of this information may be personal data.

We may use it in order to:

  • verify your identity for security purposes when you use our services

  • sell products to you

  • provide you with our services

  • provide you with suggestions and advice on products, services and how to obtain the most from using our website

  • process your payment information to allow you access to the services purchased


We process this information on the basis there is a contract between us, or that you have requested we use the information before we enter into a legal contract. This contract can be regarded as providing services following your purchase of the services available through our website.

We shall continue to process this information until the contract between us ends or is terminated by either party under the terms of the contract.


10. Information we process for the purposes of legitimate interests


We may process information on the basis there is a legitimate interest, either to you or to us, of doing so.


Where we process your information on this basis, we do after having given careful consideration to:


  • whether the same objective could be achieved through other means

  • whether processing (or not processing) might cause you harm

  • whether you would expect us to process your data, and whether you would, in the round, consider it reasonable to do so


For example, we may process your data on this basis for the purposes of:


  • improving our services

  • record-keeping for the proper and necessary administration of the business

  • responding to unsolicited communication from you to which we believe you would expect a response

  • preventing fraudulent use of our services

  • exercising our legal rights, including to detect and prevent fraud and to protect our intellectual property

  • insuring against or obtaining professional advice that is required to manage the business risk

  • protecting your interests where we believe we have a duty to do so


11. Information we process because we have a legal obligation


Sometimes, we must process your information in order to comply with a statutory obligation.


For example, we may be required to give information to legal authorities if they so request or if they have the proper authorisation such as a search warrant or court order.


This may include your personal data.


How and when we process your personal data


12. Your personal data is not shared


We do not share or disclose to any additional third party, any information collected through our website unless stated in this privacy notice. In this instance ‘Third Party’ is not inclusive of our website host, Any social media platforms you interact with while using our site are not included in our privacy policy and we cannot accept responsibility for how they may use your personal data. Please see the privacy policies of those sites individually to see how they process your data.


13. Information you provide


Our Social Media and website allows you to post information with a view to that information being read, copied, downloaded, or used by other people.


For example, when you leave a review or post a message on our social media pages, we reasonably assume that you consent for the message to be seen by others. We may include your username with your message, and your message may contain information that is personal data.


Other examples include:


  • tagging an image

  • clicking on an icon next to another visitor’s message to convey your agreement, disagreement or thanks


In posting personal data, it is up to you to satisfy yourself about the privacy level of every person who might use it.


We do not specifically use this information except to allow it to be displayed or shared.


We do store it, and we reserve a right to use it in the future in any way we decide.


Once your information enters the public domain, we have no control over what any individual third party may do with it. We accept no responsibility for their actions at any time.


Provided your request is reasonable and there is no legal basis for us to retain it, then at our discretion we may agree to your request to delete personal data that you have posted. You can make a request by contacting us at


14. Payment information


Our website is not transactional, and any payments you make to us require a direct bank transfer or by cheque sent via post.


We do not store your payment details anywhere outside of the bank account used to facilitate these payment types. Your payment details are not stored on our website. The only payment details stored on our website are the amounts paid and on what date, no information is stored anywhere else that would lead to your personal data being shared.

We take the following measures to protect your payment information:


  • We do not keep all your payment information so as to prevent any other third party from carrying out a transaction without your consent

  • Access to your payment information is restricted to authorised trustees only.

  • If we ask you questions about your payment information, we will only refer to the reference provided.


15. Information obtained from third parties


Although we do not disclose your personal data to any third party (except as set out in this notice), we sometimes receive data that is indirectly made up from your personal data from third parties whose services we use.


No such information is personally identifiable to you.


16. Third party advertising on our website


Third parties may be hyperlinked or advertised on our website or social media. In doing so, those parties, their agents or other companies working for them may use technology that automatically collects information about you when their advertisement is displayed on our website.


They may also use other technology such as cookies or JavaScript to personalise the content of, and to measure the performance of their adverts.


We do not have control over these technologies or the data that these parties obtain. Accordingly, this privacy notice does not cover the information practices of these third parties.


17. Disputes between users


In the event of a dispute between you and another user, provided that you consent, we may share your basic personal data, business information and contact information with the other user.


At our discretion, we may share other information to enable the dispute to be resolved through litigation or alternative dispute resolution methods.


18. Referral partners


This is information given to us by you in your capacity as an affiliate of us or as a referral partner.


It allows us to recognise visitors that you have referred to us, and to credit to you commission due for such referrals. It also includes information that allows us to transfer commission to you.


The information is not used for any other purpose.


We undertake to preserve the confidentiality of the information and of the terms of our relationship. 


We expect any affiliate or partner to agree to reciprocate this policy.


19. Transfer of data


When using our website, hosted by Wix, Wix may store your data in a number of locations. Your personal information may be stored in data centers located in the United States of America, Ireland, South Korea, Taiwan and Israel. They may use other jurisdictions as necessary for the proper delivery of our services and/or as may be required by law. Wix is a global company that respects the laws of the jurisdictions it operates within. The processing of the User Customer Data may take place within the territory of the European Union, Israel or a third country, territory, or one or more specified sectors within that third country, of which, the European Commission has decided that it ensures an adequate level of protection (transfer on the basis of an adequacy decision). 


“The security of sensitive data is of extreme importance to Wix and we are 100% committed to data protection. See all the security certifications received by”


You can read more about Wix’s privacy policy here:

Use of information we collect through automated systems


20. Cookies


Cookies are small text files that are placed on your computer's hard drive by your web browser when you visit a website that uses them. They allow information gathered on one web page to be stored until it is needed for use at a later date.


You can read more about our cookie policy here.


21. Personal identifiers from your browsing activity


Requests by your web browser to our servers for web pages and other content on our website are recorded.


We record information such as your geographical location, your Internet service provider and your IP address. We also record information about the software you are using to browse our website, such as the type of computer or device and the screen resolution.


We use this information in aggregate to assess the popularity of the webpages on our website and how we perform in providing content to you.


If combined with other information we know about you from previous visits, the data possibly could be used to identify you personally, even if you are not signed in to our website.


Other matters


22. Your rights


The law requires us to tell you about your rights and our obligations to you in regard to the processing and control of your personal data.


We do this now, by requesting that you read the information provided at


23. Use of our services by children


We do not sell products or provide services for purchase by children, nor do we market to children.


If you are under 18, you may use our website only with consent from a parent or guardian.


24. Encryption of data sent between us


We use Secure Sockets Layer (SSL) certificates to verify our identity to your browser and to encrypt any data you give us.


Whenever information is transferred between us, you can check that it is done so using SSL by looking for a closed padlock symbol or other trust mark in your browser’s URL bar or toolbar.


25. Delivery of services using third party communication software


With your consent, we may communicate using software provided by a third party such as Facebook, Instagram, WhatsApp, Apple (Facetime), Microsoft (Skype) or Zoom Video Communications (Zoom).


Such methods of communication should secure your personal data using encryption and other technologies. The providers of such software should comply with all applicable privacy laws, rules, and regulations, including the GDPR.


If you have any concerns about using a particular software for communication, please tell us.


26. Control over your own information


It is important that the personal data we hold about you is accurate and up to date. Please inform us if your personal data changes. At any time, you may contact us to request that we provide you with the personal data we hold about you.


To obtain a copy of any information that is not provided on our website you should contact us to make that request.


When we receive any request to access, edit or delete personal data we first take reasonable steps to verify your identity before granting you access or otherwise taking any action. This is important to safeguard your information.


Please be aware that we are not obliged by law to provide you with all personal data we hold about you, and that if we do provide you with information, the law allows us to charge for such provision if doing so incurs costs for us. After receiving your request, we will tell you when we expect to provide you with the information, and whether we require any fee for providing it to you.


If you wish us to remove personally identifiable information from our website, you should contact us to make your request.

This may limit the service we can provide to you.


We remind you that we are not obliged by law to delete your personal data or to stop processing it simply because you do not consent to us doing so. While having your consent is an important consideration as to whether to process it, if there is another legitimate basis on which we may process it, we may do so on that basis.


27. Communicating with us


When you contact us, whether by telephone, through our website or by email, we collect the data you have given to us in order to reply with the information you need.


We record your request and our reply in order to increase the efficiency of our business.


We may keep personally identifiable information associated with your message, such as your name and email address so as to be able to track our communications with you to provide a high quality service.


28. Complaining


If you are not happy with our privacy policy, or if you have any complaint, then you should tell us.


When we receive a complaint, we record the information you have given to us on the basis of consent. We use that information to resolve your complaint.


We aim to investigate all complaints relating to user generated content. However, we may not be able to do so as soon as a complaint is made. If we feel that it is justified or if we believe that the law requires us to do so, we shall remove the content while we do so.

Making a complaint may not result in the removal of the content. Ultimately, we have to make a judgement as to whose right will be obstructed: yours, or that of the person who posted the content that offends you.


If we think your complaint is vexatious or without any basis, we shall not correspond with you about it.


If your complaint reasonably requires us to notify some other person, we may decide to give to that other person some of the information contained in your complaint. We do this as infrequently as possible, but it is a matter for our sole discretion whether we do give information, and if we do, what that information is.


We may also compile statistics showing information obtained from this source to assess the level of service we provide, but not in a way that could identify you or any other person.


If a dispute is not settled then we hope you will agree to attempt to resolve it by engaging in good faith with us in a process of mediation or arbitration.


If you are in any way dissatisfied about how we process your personal data, you have a right to lodge a complaint with the Information Commissioner's Office (ICO). This can be done at We would, however, appreciate the opportunity to talk to you about your concern before you approach the ICO.


29. Retention period


Except as otherwise mentioned in this privacy notice, we keep your personal data only for as long as required by us:


  • to provide you with the services you have requested

  • to comply with other law, including for the period demanded by our tax authorities

  • to support a claim or defence in court


30. Compliance with the law


Our privacy policy complies with the law in the United Kingdom, specifically with the Data Protection Act 2018 (the ‘Act’) accordingly incorporating the EU General Data Protection Regulation (‘GDPR’) and the Privacy and Electronic Communications Regulations (‘PECR’).


31. Review of this privacy policy


We shall update this privacy notice from time to time as necessary.

Membership Policy

Membership Policy

AMNET is a membership based charity, although we do not restrict information and support to anyone who requests it.

Annual subscription is on an individual or couples basis and is not transferable, and entitles the member to a full year of newsletters and access to the ‘Members only’ section of the website and any available activities in which they wish to participate.

Membership begins from the date of payment and expires no less than a year later. Members may be granted an additional access period to the members-only area of the website, depending on the time taken for admin to be completed on receving payment to granting access.

Reminders about membership renewal will be sent out automatically from the website, 14 days and 3 days in advance of payment being due. If you do not provide an email address, one reminder will be sent via post.

A 7 day cooling off period is applicable to all new subscribers only, with the option for a full refund of their subscription charge within this period if the new member considers the membership not suitable for them, or for whatever reason they do not wish to continue. Cancellations after 7 days will not be eligible for return of the subscription fee.

Once payment has been received, two emails will be sent out to the email address you provide. One to inform you that your membership registration has been successful and payment has been received, and a second containing a link to set up a password to give you access to the members area - please do not try to login until you've received this email. 

As a member, you will be granted access to members only resources. These resources are provided on the agreement that when downloading the files available, you agree to use these files for personal use only. Under no circumstances is it to be distributed, shared or copied. The sharing of downloaded materials or members only account access is strictly forbidden, this includes, but is not limited to, the sharing of your login information to both other members and non-members.

If you purchase a 'couples' membership, access will be granted to the second person in your membership when their email address is provided. If you do not provide an email address for the second person in your membership, they are granted permission to view resources through your account only. Please do not share with them your login details or any downloadable resources via email or other file share services.

Cookie Notice

Cookie Notice

Cookies are small text files that are placed on your computer's hard drive by your web browser when you visit a website that uses them. They allow information gathered on one web page to be stored until it is needed for use at a later date.


They are commonly used to provide you with a personalised experience while you browse a website, for example, allowing your preferences to be remembered.


They can also provide core functionality such as security, network management, and accessibility; record how you interact with the website so that the owner can understand how to improve the experience of other visitors; and serve you advertisements that are relevant to your browsing history.


Some cookies may last for a defined period of time, such as one visit (known as a session), one day or until you close your browser. Others last indefinitely until you delete them.


Your web browser should allow you to delete any cookie you choose. It should also allow you to prevent or limit their use. Your web browser may support a plug-in or add-on that helps you manage which cookies you wish to allow to operate. 


The law requires you to give explicit consent for use of any cookies that are not strictly necessary for the operation of a website.


When you first visit our website, we ask you whether you wish us to use cookies. If you choose not to accept them, we shall not use them for your visit except to record that you have not consented to their use for any other purpose.


If you choose not to use cookies or you prevent their use through your browser settings, you may not be able to use all the functionality of our website.


We use cookies in the following ways:


  • to track how you use our website

  • to record whether you have seen specific messages we display on our website

  • to record your answers to forms, surveys and questionnaires on our site while you complete them

  • to record the conversation thread during a live chat with our support team

  • to allow the efficient saving and retrieval of access to the members only section of our website

  • to monitor the usage of members-only accounts to assess whether account access is being shared against our member policy

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