Last updated: 21/5/26
Contents table:
- Introduction
- How we Collect Data
- Categories of Personal Data
- Reasons for using your details and legal reasons for doing so
- Legitimate Interest
- Sharing your data
- Anonymised and combined information
- Transferring information outside the UK
- How long we keep your personal information
- Your Rights
- The right to be informed
- The right to access
- The right to rectification
- The right to erasure
- The right to restrict processing
- The right to data portability
- The right to object to processing
- Automated decision-making processes
- Complaints
This privacy notice applies to anyone who interacts with us regarding our services by any method, (such as website, phone, email). We may, on occasion, provide further privacy information for specific contact methods or in relation to specific services.
If you have any questions about this, please contact us at info@emotiondysregautism.org
Emotion Dysregulation in Autism is registered with the Information Commissioner’s Office under the following registration number: ZB671247
Contacting our Data Protection Officer
Data Protection Officer
Emotion Dysregulation in Autism
The Exchange
Companies999
45 St. Pauls Square
Birmingham
B17 9LN
Email: info@emotiondysregautism.org
How we Collect Data
We collect personal data from you when you:
- You submit a form
- Make a donation
- Request information about us
- Submit a referral request
- Or otherwise provide us with personal information, whether online, email, on the phone or via post
We may also collect information from other people or organisations
For all of our service users, we may collect information from:
- Your parent/guardian, if you are under 18 years old
- A family member, advocate or someone acting on your behalf
- Health Care Professionals, Doctors or other clinicians
- Local Authorities
Categories of Personal Data
Standard personal information such as: –
- Contact information such as our name, address, email address and phone numbers
- The country where you live, your age, your date of birth, national identifies such as your national insurance number or passport number
- Information about your employment
- Details of any contact we have had with you, such as any complaints or incidents
- Financial details, such as details of payments and your bank account details
- Information about how you use our services
- Information about how you use our website or other technology such as IP addresses or other device information
Special categories of data
- Information about your physical and mental health including genetic or biometric information
- Information about your race, ethnic origin and religion, this information may be provided from your medical preferences to allow us to provide the support and service you need.
The Charity processes personal data in relation to its own staff, Case Notes, Research, Registers and individual client contacts and is a data controller for the purposes of the Data Protection Laws.
The Charity may hold personal data on individuals for the following purposes:
- Staff administration;
- Advertising, marketing and public relations
- Accounts and records;
- Case Notes – Our Peer Support Workers and Volunteers record information about the peer support you have received into case notes so that we can provide you with personalised on-going support whilst using our services. Case notes include mental health presentation, mood assessment, named contacts and risk assessment
- Research – Trustees and volunteers within The Charity will need to store information about specific research including participants contact information, research findings and funding bid application history.
- Registers of young people, parents/carers who come to events – Such as launch events or youth advisory groups, including contact details and risk assessments.
- Registers of mental health clinicians and young people with lived experience – These people come to advisory board committees with recorded minutes of meetings.
- Contact details of potential philanthropists, corporate donors and partners – within the ongoing activities of The Charity with contracts attached
- Administration and processing of Young Person’s personal data for the purposes of providing Peer Support services, including processing using software solution providers and back-office support to include Compliance for on-boarding
- Administration and processing of clients’ personal data for the purposes of supplying/introducing Peer Support Workers.
What we use your personal information for and our legal reasons for doing so
We process your personal information for the purposes set out in this privacy notice. We have also set out some legal reasons why we may process your personal information (these depend on what category of personal information we are processing). We normally process standard personal information if this is necessary to provide the services set out in a contract, it is in our or a third party’s legitimate interests or it is required or allowed by any law that applies. Please see below for more information about this and the reasons why we may need to process special category information.
By law, we must have a lawful reason for processing your personal information. We process standard personal information about you if this is:
- necessary to provide the services set out in a contract − that is, to provide you and your dependants with our products, support, services and education
- in our, or a third party’s, legitimate interests − details of those legitimate interests are set out in more detail in the ‘Legitimate interest’ section below; or
- required or allowed by law.
We process special category information about you because:
- it is necessary for the purposes of providing peer support
- it is necessary for an insurance purpose (for example, advising on, arranging, providing or managing an insurance contract, dealing with a claim made under an insurance contract, or relating to rights and responsibilities arising in connection with an insurance contract or law)
- it is necessary to establish, make or defend legal claims (for example, claims against us for insurance)
- it is necessary for a purpose designed to protect the public against dishonesty, malpractice or other seriously improper behaviour (for example, investigations in response to a safeguarding concern, a member’s complaint or a regulator, such as the Care Quality Commission or the Information Commissioners Office, telling us about an issue)
- it is in the public interest, in line with any laws that apply
- it is information that you have made public; or
- we have your permission. As is best practice, we will only ask you for permission to process your personal information if there is no other legal reason to process it. If we need to ask for your permission, we will make it clear that this is what we are asking for and ask you to confirm your choice to give us that permission. If we cannot provide a product or service without your permission (for example, we cannot manage and run a service without health information), we will make this clear when we ask for your permission. If you later withdraw your permission, we will no longer be able to provide you with a product or service that relies on having your permission.
We may process information about your criminal convictions and offences (if any) because of anti-fraud and anti-money-laundering checks or to check other unlawful behaviour or carry out investigations with other insurers and third parties for the purpose of detecting fraud. We do this if it is necessary to prevent or detect a crime.
Legitimate Interest
We process your personal information for a number of legitimate interests, including managing all aspects of our relationship with you, for marketing, to help us improve our services and to exercise our rights. More detailed information about our legitimate interests is set out below.
Taking into account your interests, rights and freedoms, legitimate interests which allow us to process your personal information include:
- to manage our relationship with you, our business and third parties who provide products or services for us
- to provide services on behalf of a third party (for example, a local authority)
- to make sure that complaints are investigated and handled efficiently
- to keep our records up to date and to provide you with marketing as allowed by law
- to develop and carry out marketing activities and to show you information that is of interest to you, based on our understanding of your preferences
- for statistical research and analysis so that we can monitor and improve services and websites
- for use in the development of a historical record of the Charity
- to contact you about market research we are carrying out
- to monitor how well we are meeting our performance expectations
- to enforce or apply our website terms of use, our notice terms and conditions or other contracts, or to protect our (or our customers’ or other people’s) rights, property or safety
- to exercise our rights, to defend ourselves from claims and to keep to laws and regulations that apply to us and the third parties we work with
- to take part in, or be the subject of, any merger or takeover of all or part of the Charity
- we may contact you by email, SMS or messaging platforms such as WhatsApp, about our charitable activities, campaigns, and ways you can support us. We rely on the “charitable purpose soft opt-in” exemption under the Privacy and Electronic Communications Regulations (PECR), as amended by the Data (Use and Access) Act 2025.
Sharing your Information
We share your information within Emotion Dysregulation in Autism, with people acting on your behalf (for example, parents, guardians or advocates) and with others who help us provide services to you (for example, health care providers and medical assistance providers) or who we need information from to allow us to handle or confirm care plans or support needs (for example, professional associations). We also share your information in line with the law. For more information about who we share your information with, please see below.
We sometimes need to share your information with other people or organisations for the purposes set out in this privacy notice. The exact information we share depends on the reason we are sharing it. For example, if we need to share information to provide health care, we will share special categories of information, such as medical details, with the treatment provider.
For all our customers, we may share your information with:
- doctors, clinicians and other health care professionals, hospitals, clinics and other health care providers so that they can provide treatment so that they can provide treatment and we can monitor the quality of your treatment and care
- people or organisations we must, or are allowed to, share your personal information with by law (for example, for fraud prevention or safeguarding purposes, including with the Care Quality Commission)
- the police and other law-enforcement agencies to help them perform their duties, or with others if we must do this by law or under a court order
- organisations that carry out surveys on our behalf
- if we sell or buy any business or assets, the potential buyer or seller of that business or those assets
- a third party who takes over any or all The Charity’s assets (in which case personal information we hold about our customers or visitors to the website may be one of the assets the third party takes over).
Anonymised and combined information
We may use your data to conduct research and statistical analysis. If we use this information, it will be in an anonymised format (with all names and other identifying information removed) or information that is combined with other people’s information, or may be shared with others, for research or statistical purposes. You cannot be identified from this information, and we will only share the information in line with legal agreements which set out an agreed, limited purpose and prevent the information being used for commercial gain.
Transferring information outside the UK
The Charity does not directly transfer information outside of the UK. However, some companies that we work in partnership with or that provide services to us are in, or run their services from, countries across the world. As a result, we may transfer your personal information to many different countries. This may include transferring information outside the UK.
We take steps to make sure that, when we transfer your personal information to another country, appropriate protection is in place, in line with global data protection laws. Certain countries are considered to provide an adequate level of protection because of the data protection laws in place in those countries. If this is not the case, the protection may be set out under our contract with the organisation who receives the information
How long we keep your personal information
We keep your personal information in line with set periods calculated using the following criteria:
- How long you have had a relationship with us, the types of service you have with us, and when you will no longer require our help or advice
- How long it is reasonable to keep records to show we have met the obligations we have to you and by law
- Any time limits for making a claim
- Any periods for keeping information which are set by law or recommended by regulators, professional bodies or associations
- Any relevant proceedings that apply.
If you would like more information about how long we will keep your information for, please email us at info@emotiondysregautism.org
Your rights
You have the right to access your information and to ask us to correct any mistakes and delete and restrict the use of your information. You also have the right to object to us using your information, to ask us to transfer information you have provided; to withdraw permission you have given us to use your information and to ask us not to use automated decision-making which will affect you. For more information, see below.
- Right of access: you have the right to make a request for details of your personal information and a copy of that personal information.
- Right to rectification: you have the right to have inaccurate information about you corrected or removed.
- Right to erasure (‘right to be forgotten’): you have the right to have certain personal information about you deleted from our records.
- Right to restriction of processing: you have the right to ask us to use your personal information for restricted purposes only
- Right to object: you have the right to object to us processing (including profiling) your personal information in cases where our processing is based on a task carried out in the public interest or where we have let you know it is necessary to process your information for our or a third party’s legitimate interests. You can object to us using your information for direct marketing and profiling purposes in relation to direct marketing.
- Right to data portability: you have the right to ask us to transfer the personal information you have given us to you or to someone else in a format that can be read by computer.
- Right to withdraw consent: you have the right to withdraw any permission you have given us to handle your personal information. If you withdraw your permission, this will not affect the lawfulness of how we used your personal information before you withdrew permission, and we will let you know if we will no longer be able to provide you with your chosen product or service.
- Right in relation to automated decisions: you have the right not to have a decision which produces legal effects which concern you or which have a significant effect on you based only on automated processing, unless this is necessary for entering into a contract with you, it is authorised by law or you have given your permission for this. We will let you know if we make automated decisions, our legal reasons for doing this and the rights you have.
Please note other than your right to object to us using your information for direct marketing (and profiling for the purposes of direct marketing), your rights are not absolute. This means they do not always apply in all cases, and we will let you know in our correspondence with you how we will be able to meet your request relating to your rights.
If you make a request, we will ask you to confirm your identity if we need to, and to provide information that helps us to understand your request better. We have 21 days to respond to requests relating to automated decisions. For all other requests we have one month from receiving your request to tell you what action we have taken.
In order to exercise your rights, please email us at info@emotiondysregautism.org
How to complain
You can always make a complaint if you are unhappy with the way we have used your data by contacting us at info@emotiondysregautism.org
You can also complain to the ICO if you are either unhappy with how we responded to your complaint or with how we have used your data.
The ICO’s address:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Helpline number: 0330 123 1113