Privacy policy

Who are we and how you can contact us?

Neuro Diverse Self Advocacy Forum/Partnership (“we”, “our”, “us”) are a group of volunteers who run a not for profit online forum.  The aim of our site is to help build a self-advocacy and peer to peer support network for the empowerment of autistic adults.

If you have any questions about the personal information we collect and process, please use the ‘contact us’ form and we will get back to you as soon as possible.

The purpose of processing your personal data

To enable us to achieve our aims we ask you to provide some of your personal data when registering on our site. The purpose of processing your data is to:

  • Enable users to register to use the forum
  • Improve and update the service
  • Help users to personalise their experience on the forum

By collecting and processing your personal data in this way, we are a data controller under the General Data Protection Regulation (GDPR).  We are therefore committed to protecting and respecting your privacy and personal data when using our site in accordance with GDPR.  

What information do we hold about you?

The type of data that we hold includes:

  • Your email address;
  • Your IP address;
  • Your time zone and location

Further data may be held if you choose to share it. This may include:

  • Special category data – details of any conditions shared under your account profile;
  • Your date of birth;
  • Any other personal data that you choose to share in the ‘About you’ section of your profile;

We collect some or all of this information in the following cases:

  • You register as a member on this site;
  • You fill out our contact form;
  • You browse this site. See “Cookie policy” below;
  • You fill out fields on your profile;
  • You use the site & forum

Your personal information is stored on a server in UK at our web hosting supplier ‘Sparky’s Lab’ and nowhere else. ‘Sparky’s Lab’ cannot and will not access your data. We do not pass your personal, identifiable information about you to anyone except in circumstances required by law, e.g. with a court order.

Only anonymised, aggregated browsing data is stored by google analytics for the purpose of us improving the users experience on our site.

How your personal information is used

We use the following types of personal data to improve your user experience and to improve the features of this site:

  • Email address – used to register you on the site and to keep in touch with our members with regular updates and newsletters. However, you can opt-in to or opt-out of such emails in your profile.
  • Location – as you enter it, helps us to develop more relevant service for all users.
  • Date of birth – if you share it may be used to confirm that you are old enough to use our forum as agreed in the NDSA terms and conditions.
  • IP address, and time zone are recorded when you perform certain actions on our site. Your IP address is never publicly visible. They are used so that the site recognises you when you return, to improve the user experience and develop the service.

We also collect information that you choose to share with us under your account details. The information that you provide is optional and can be changed by yourself according to your preferences under your account settings. This information is only displayed by your choice if you would like to help others visiting your account to better understand your circumstances:

  • Avatar – you may choose an anonymous image or personal photo. This helps to personalise your interactions with others.
  • Information about your conditions– this helps others to better understand and relate to your circumstances
  • Any personal data that you may choose to share with other members included in the ‘About You’ section of your account details.

Forum Posts

Posts on the forum are visible to all forum members, moderators and the public. You will need to keep this in mind when choosing to share any personal information about yourself, including the metadata of the media you upload. It is therefore advisable to choose a user name that doesn’t identify you personally. The posts you choose to make do not fall under personal information. Users will also need to be aware of the NDSA terms and conditions about posting private and confidential information about themselves and others.

Other ways we may use your information

We may collect non-personally identifiable information about you in the course of your interaction with our site through Google Analytics.  This information may include technical information about the browser or type of device you’re using and is only used for the purposes of analytics and tracking the number of visitors to our site. However, we do not pass your personal data to Google or anyone else. This data is only aggregated anonymised data that will be used to help to improve our site.

We believe that data analytics appropriately allows us to see which aspects of the site and forum are popular and which need improvement, meaning we can improve the site for everyone.

Lawful Basis

We believe Neurodiverse Self Advocacy Forum has a legitimate interest in collecting and processing personal data. The data that we collect is used to provide a helpful service, and to develop and improve the service for members.

How long do we keep your personal data for?

We will store your personal data for as long as required. However, users may contact us if they no longer wish to use the site and want their data erased.

Keeping your data secure

Protecting your data and your privacy is important to us. We are committed to ensuring that any information you provide to us is secure (that doesn’t include the information you disclose in your posts on the forum, which is public). In order to prevent unauthorized access or disclosure, we have put in place suitable measures and procedures to safeguard and secure the information that we collect.

In the event of an unlikely data breach we will inform the Information Commissioner’s Office within 72 hours of the discovery of the breach, if it is assessed to be reportable.

Cookie policy

Cookies are small text files which are set by us on your computer which allow us to provide certain functionality on our site, such as being able to log in, or remembering certain preferences.

We have a detailed cookie policy and more information about the cookies that we set on this page

Cookies are used to improve yours and other users’ experience on our site. They enable us to see which aspects of the site and forum are working well and which need improvement, meaning we can improve the site for everyone.

Your Rights


You have a right to access the personal data we hold about you or obtain a copy of it. We have up to 30 days in which to respond to your request, however we will endeavour to get back to you as soon as possible. We will notify you within this 30-day period if this time frame will be exceeded.

Please note that the first copy will be free, however, subsequent requests will incur a fee of £25.


If you believe that the information, we hold for you is incomplete or inaccurate, you have a right to contact us to ask us to complete or correct that information.


You also have the right to ‘be forgotten’ by requesting us to erase any of your personal data, which we are not under legal obligation to keep. .


You have a right to ask to restrict that way we are using your personal data. This may include asking us to opt you out of using your email to send you newsletters and updates.


You have the right to ask us to stop processing your personal data at any time. For example, if you wish stop being a member of the forum, you can ask us to stop your registered user status.

You do not have the right to withdraw your consent for the Company’s  use of your personal data when the lawful basis for the Company holding and processing the data is either “Legal Obligation” or “Legitimate Interest”.

You do not have the right to require the Company to erase any of your personal data held by the Company when the Company’s  lawful basis for holding and processing the data is “Legal Obligation”.


To exercise any of your rights regarding your personal data, please not hesitate to contact us.


If you are concerned about how we collect and process your personal data, please contact us in the first instance. We will do our best to address your concerns and resolve any problems.

Acceptance of this policy

Continued use of our site signifies your acceptance of this policy. If you do not accept the policy, then please do not use this site. When registering we will further request your explicit acceptance of this privacy policy.

Changes to this policy

We may make changes to this policy at any time. You may be asked to review and re-accept the information in this policy if it changes in the future.