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The mental health charity for autistic young people.

We provide peer support, training and social action in the Birmingham area.

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Emotion Dysregulation Autism Privacy Policy

Last updated: Monday 28th November 2022

Our contact details

Name: Emotion Dysregulation Autism

Address: 4 Maybank BIRMINGHAM B9 5FF

E-mail: office@emotiondysregautism.org

The type of personal information we collect

We currently collect and process the following information:

  • Case Notes Our 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 EDA 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 E-DA with contracts attached

How we get the personal information and why we have it

Most of the personal information we process is provided to us directly by you for one of the following reasons:

  • Peer support
  • Research
  • Event Registration
  • Donations
  • Direct Contact
  • Newsletter Signup

We also receive personal information indirectly, from the following sources in the following scenarios:

  • Provide peer support to people within local communities

We use the information that you have given us in order to:

  • Provide peer support to people within local communities
  • Conduct Research and as such will store and process information relating to this research, such as the outcomes and the personal details of the participants
  • Market information about EDA and our upcoming events
  • Process and store your information if you have donated, signed up to an event or contacted us

We do not share this information with other parties.

Under the UK General Data Protection Regulation (UK GDPR), the lawful bases we rely on for processing this information are:

  • Your consent. You are able to remove your consent at any time. You can do this by contacting office@emotiondysregautism.org
  • We have a contractual obligation.
  • We have a legal obligation.
  • We have a vital interest.
  • We need it to perform a public task.
  • We have a legitimate interest.

How we store your personal information

Your information is securely stored, encrypted and access to such information is limited to privileged Trustees, Volunteers and Employees only.

We keep information we’re not legally required to store for 12 months after the last recently accessed time. We will then dispose of your information by deleting it from our system.

Your data protection rights

Under data protection law, you have rights including:


Your right of access - You have the right to ask us for copies of your personal information.

Your right to rectification - You have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.

Your right to erasure - You have the right to ask us to erase your personal information in certain circumstances.

Your right to restriction of processing - You have the right to ask us to restrict the processing of your personal information in certain circumstances.

Your right to object to processing - You have the right to object to the processing of your personal information in certain circumstances.

Your right to data portability - You have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances.


You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you.

Please contact us at office@emotiondysregautism.org if you wish to make a request.

How to complain

If you have any concerns about our use of your personal information, you can make a complaint to us at office@emotiondysregautism.org.


You can also complain to the ICO if you are unhappy 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: 0303 123 1113


ICO website: https://www.ico.org.uk