Community Privacy Policy

This privacy policy was last updated on 08/04/2026.

Next review date: 01/10/2027.

Definitions

We/Us/Our terms refer to Rise As We Are CIC, a Community Interest Company (CIC) incorporated in England and Wales. Our company number is 16572786 and our registered address is 2 Hawthorn Close, Old Dalby, Melton Mowbray, Leicestershire, LE14 3LN, UK.

You/Member (or collectively, Members) terms refer to any individual who registers for, accesses and uses our online Community service.

Rise As We Are CIC provides support, guidance and education services to people with neuro-differences and the families and caregivers of neurodivergent people, as well as organisations connected with their education and employment.

Our online Community is a members-only subscription service for adults which is owned and operated by Rise As We Are CIC, and which is hosted on a platform owned and operated by Heartbeat Chat Inc (“Heartbeat”). Our Community provides support from specialist consultants and fellow members via chatrooms, resources, educational and social online events, and also provides opportunities for members to build friendships and support networks with other members.

Introduction

This privacy policy applies solely to information collected and used in connection with the activities and functions of the Rise As We Are CIC online Community, including any online events and communications specifically connected with our Community.

You can read our organisation’s full Privacy Notice which details what personal information we request, use and store in connection with all of our services, and when and why we request and use it, by clicking on the link below:

Rise As We Are CIC Privacy Notice

Our online Community is hosted on a platform which is owned and operated by Heartbeat. In order to access and use our Community, you must first register with the Heartbeat platform. Your use of the Heartbeat platform will require you to agree to the terms of Heartbeat’s Privacy Policy in addition to our own. You can view Heartbeat’s Privacy Policy which details how they use, store and process your personal information by clicking on the link below:

Heartbeat Chat Privacy Policy

Our Community may contain links to other websites and suggestions of other organisations and businesses. Please be aware that we are not responsible for the privacy practices, content, the monitoring of content and the activities for such other websites, organisations and businesses and therefore we take no responsibility once you leave our Community. Linking to other websites, organisations and businesses from our Community does not necessarily imply endorsement on the part of Rise As We Are CIC.

By accessing and using our Community you agree to the terms of this policy.

Community membership registration

Access to our Community requires you to first register with the Heartbeat platform. Heartbeat's registration process only requires you to provide the following personal information:

Your email address.

You are then required to submit a payment for your first recurring monthly subscription charge. Our nominated payment processor, Stripe LLC, requires the following personal information in order to process your monthly subscription payment:

Your email address;
Your debit/credit card details;
Your country/territory.

Depending on your chosen payment card and/or location, you may also be required to provide additional information such as your name, home address and contact details. Your payment information is only used and held securely by Stripe LLC for the purpose of processing your recurring monthly subscription charge, and cannot be accessed or stored by us or Heartbeat.

Once your payment has been accepted, you will then access our Community onboarding where you will create your ‘Member Profile’ and agree to our Community’s Code of Conduct. Our onboarding process requires:

A ‘profile picture’: You can choose to either upload an image of yourself or upload a non-identifying image;
Your name: You can choose to provide your full name, your first name only, or adopt a non-identifying username;
Your location: You are required to provide us with your general location of residence from a list (only your nearest city and the country you reside in);
The creation of your ‘Bio’: We ask a few questions to help you create a general description of who you are (your ‘Bio’). You are informed of which answers you submit will be visible to all users of our Community or accessible only by us. All questions allow you to choose what personal information you share with us.

Your ‘Member Profile’ gives you an opportunity to describe some aspects of who you are as a person for the purpose of building friendships and a support network within our Community. Your personal contact information is not visible to other members of our Community. The answers you provide during the onboarding process also enables us to better deliver our services to meet your individual needs.

The Heartbeat platform provides you with access in your ‘Account Settings’ to edit and amend all aspects of your ‘Member Profile’ at anytime should you choose to do so.

We, and Heartbeat, do not use your personal information for any purposes outside the scope of providing our services to you. We, and Heartbeat, do not sell your information to third parties.

Use of our Community

Beyond the information we collect and use to process your membership registration, your subscription payments and communicate with you, your use of our Community does not require your disclosure of your personal information unless you choose to share any information with us or our Community members.

The nature of our Community is to provide you and all other members with support and guidance, and help you to build friendships and a support network. In order to achieve this, you and other members of the Community may freely engage in varied discussions, ask questions and share your personal experiences within any area of our Community.

For example, you might freely post a question in a chatroom describing an aspect of your personal health or lifestyle (no matter what the topic) because you are seeking advice and guidance from other Community members and/or specialists. We, and other Community members, may use the information you have provided us for the purpose of answering your question and offering you support, advice and guidance.

Any personal information you choose to disclose within any area of our Community is done so at your discretion. Any information you share within any of our Community chatrooms may be edited or removed by yourself if you choose to do so. We will not use your personal information provided in such instances for any purpose beyond the scope of our services, unless there is a ‘vital reason’ or we have a ‘legal obligation’ to do so.

A ‘vital reason’ is when collecting or using the information is needed when someone’s physical or mental health or wellbeing is at urgent or serious risk. This includes an urgent need for life sustaining food, water, clothing or shelter. All of your data protection rights may apply, except the right to object and the right to portability.

A ‘legal obligation’ is when we have to collect or use your information so we can comply with the law. All of your data protection rights may apply, except the right to erasure, the right to object and the right to data portability.

Communications, information updates and marketing

When you join our Community, we and Heartbeat will use your personal contact information to send you emails and notifications containing information updates, reminders and marketing regarding our Community and our other services. Heartbeat will also use your email address for their two-factor authentication process each time you log in to our Community. Our payment processor, Stripe LLC, will send you emails and/or notifications relating to your membership subscription payments.

The emails you receive from us relating to our Community will either be sent directly from Rise As We Are CIC (riseasweare.org) or via Heartbeat. If you access our Community using the Heartbeat desktop and/or mobile app, you may also receive push notifications from us on your device sent via Heartbeat.

Some automation and profiling may be used to send emails or a series of emails based on your indicated preferences and your interactions with our Community and with the emails we send to you. For example if you have chosen to attend one of our events, we may send you a confirmation email, reminders and a feedback request about that event.

Your communication preferences are set by default when you first register your Community account with us. You can amend the default settings and choose which emails and notifications you receive from our Community by accessing your ‘Account Settings’ and then the ‘Notifications’ page within our Community. Emails related to your ability to log in to our Community and your payment confirmations cannot be disabled.

Access to your calendar

If you choose to connect your Google account to your Community account, you will provide Heartbeat access to your Google Calendar only for the purpose of creating automated entries into your calendar for any and all Community events that you choose to attend. Heartbeat only uses Google Calendar data to sync event data between Heartbeat and your Google Calendar. Heartbeat does not access, modify or store any Google Calendar event data that was not created via Heartbeat. Upon closing your Community account and leaving Heartbeat, your integration with Google is discarded and Heartbeat does not maintain access to your Google Calendar. Heartbeat does not share any Google Calendar data with third parties, including ourselves.

Heartbeat’s use of your Google Calendar is governed by their own Privacy Policy which can be viewed at:

Heartbeat Chat Privacy Policy

Rise As We Are CIC do not have any access to any part of your Google account, including your calendar.

Safeguarding

When any member using any area of our Community freely discloses personal information which states or implies that their own physical or mental health or wellbeing is at urgent or serious risk, we will deem this to be a potential ‘safeguarding issue’. Our lawful basis for the collection of any personal information relating to a safeguarding issue falls within our ‘vital interests’ as described in our Privacy Notice.

In such instances, our trained staff will communicate privately with that member to offer our assistance. Private communication will be initiated within the Community platform by direct message (DM), and then by voice/video call if deemed necessary, appropriate and safe to do so. Members will be informed that any voice/video communications will be recorded if later required as evidence in any legal proceedings. Any such recordings will be deleted if no further action is required.

Personal information we obtain, use and process during any safeguarding assessment will be treated in the strictest of confidence and will be handled in accordance with our organisation’s Safeguarding Policy and Privacy Notice.

Recording of events

Our Community delivers some educational content through our live webinar events. Our webinars are hosted and managed by our Community Administrators and typically occur on the Zoom video platform. All Community members can choose to attend and participate in our webinar events.

Our live educational webinar events are recorded, and those recordings are accessible within our resources archive for any Community member to view at a later date. Members attending the event are always notified if and when the event is being recorded. We will always edit the recordings of our webinars prior to publishing them to ensure that no image, sound or other personal information of any attending member is included in the recorded material made available within our resources archive.

If any member attending a recorded event freely offers their own content that we consider to be beneficial information to share with all Community members, we will only include that member’s relevant content in the published video recording after we have obtained that member’s permission and agreed on the scope of their content to be used.

Safe practices for protecting your personal information

We encourage all members of our Community to be mindful of protecting their own personal identifying information when engaging with other members within any area of our Community, including our chatrooms, webinars, social events and direct messages (DMs). Steps you can take to protect your personally identifying information include:

Adopting a user name instead of using your real name;
Not openly sharing your contact details such as your email address, telephone number and home address with other Community members;
Not openly sharing links to your accounts on other websites and platforms where your personal details may be visible to others (eg. Facebook, LinkedIn etc);
Amending how your name is publicly displayed on your Zoom account to omit your surname or show your Community user name when attending our online events.

Any personal identifying information you freely offer within our Community is done so at your own risk. We shall not be held liable for its use by other Community members or third parties with access to our Community.

Collection And Use Of Personal Information

We will only store and use your email address as detailed in the ‘Communications, information updates and marketing’ section above.

Information that you provide during our registration onboarding process and within any area of our Community may be used by us to compile general demographics of our Community membership for the purpose of bettering our services or promoting our Community. Any information gathered, stored and used for such purposes will have any personally identifiable information removed.

We may use specific information you provide in your ‘Member Profile’ to develop our Community for the betterment of our members. For instance, if you have provided your job title or a particular skillset within your ‘Bio’, we may contact you privately to enquire whether you wish to share your knowledge with other members of our Community.

When we or Heartbeat process your personal information and Community Data, Rise As We Are CIC is the Data Controller. "Community Data” means any personal data that Heartbeat processes on behalf of us as a processor in the course of providing the services of the Community platform. “Community Data” also means all personal data provided directly by us to Heartbeat, and all personal data that members of our Community provide when they register for and participate in our Community.

As a data controller, Rise As We Are CIC has a duty to comply with the UK General Data Protection Regulation (UK GDPR) and the UK Data protection Act 2018, which requires that processing of your personal information is fair, lawful, and transparent. Furthermore, we have a legal obligation to respect the common law duty of confidentiality. Healthcare professionals are committed to maintain confidentiality.

Rise As We Are CIC is registered as a data controller with the Information Commissioner’s Office – registration number Z6794638. Our registration entry can be seen here: https://ico.org.uk/ESDWebPages/Entry/Z6794638

The Rise As We Are CIC Data Protection Officer is Dylan MacMillan who can be contacted using the details given below.

Under the Data Protection Act, we have a legal duty to protect any information we collect. We will only use your information for the purpose we have described, and your information will not be sold to third parties. We reserve the right to disclose your personal information to comply with applicable laws and government or regulatory bodies’ lawful requests for information.

The data you submit may be downloaded and transferred to our local and remote systems to facilitate processing the data, where we feel the appropriate security measures are in place.

If you choose to use any of our services outside of our Community, the use of your personal information will be governed by the privacy policy of that other service.

How long we keep information

We will only retain your personal data for as long as it is needed for the purposes set out in this document, or for as long as the law requires us to.

We will:

Keep your name and email contact data until you unsubscribe from our marketing mailing list;
Keep your feedback data for two years;
Delete access log data which contain your IP address after 120 days;
Retain personal information in connection to Community memberships for two years after your subscription has ended to facilitate membership renewal if required within that time.

For more information on how long we store your personal information or the criteria we use to determine this please contact us using the details provided below.

Changes To This Privacy Policy

If we change this privacy policy, we will post the revised privacy policy here with an updated effective date and these changes will immediately supersede any previously posted information. We will also notify all members of our Community by email.