DSE Privacy Policy
Data privacy is important to DSE, which includes Down Syndrome Education International, Down Syndrome Education USA and Down Syndrome Education Enterprises CIC ("DSE").
This Privacy Policy explains how information is collected, used and disclosed by DSE and applies to information collected when you use or access our websites, products, services or applications, or when you participate in a research study, when you make a purchase from one of our online stores or when you otherwise interact with us (collectively, "DSE Services"). We respect the privacy rights of our clients and recognise the importance of protecting information collected about you.
Information we collect
We collect information that you provide to us when you access DSE Services. We also collect some information automatically when you use DSE Services. We describe the information collected through these means below.
We do not collect information about you from third-party organizations except in limited circumstances where your permission has been given (see below).
Information you provide to us
We collect information you provide directly to us including when you visit one of our websites, register for and/or use one of the DSE Services. This includes:
- Contact Information - When you contact us, we collect any contact information you may provide, including your name, email address, telephone number, and any information you may provide to us regarding your query.
- Advice Information - In addition to Contact Information, if you contact us for advice, we may collect information about your child (or the child or children you are working with). This might, for example, include your child's age, stage of development and your questions or specific concerns.
- Subscription Information - When you register to receive updates from us, we collect your email address, name, country of residence and your stated interests relating to Down syndrome.
- Order Information - When you make a purchase or attempt to make a purchase through our websites, we collect certain information from you, including your name, billing address, shipping address, payment information (including credit card numbers), email address, and phone number.
- Donation Information - We collect your contact details and information about your donations. Stripe collects your payment details directly. If you add Gift Aid, we also collect your home address and Gift Aid declaration.
- Research Study Information - When you participate in a research study, we may collect certain information from you about your family and your child. We may also collect information through research assessments and observations. The specific information collected and the purposes for which it is collected will vary between each project. The specific details applicable to each project are provided to research participants and participants are asked to provide informed consent prior to enrolling in a study.
- Progress Trackers, Advice and Research Information - When you use any of our progress tracking or advice services, we collect the information that your provide about your child (or the child or children you are working with), including (depending on your use) measures of early development milestones, and measures of speech, language, reading and numeracy skills.
Information we collect automatically when you use DSE services
When you access or use DSE Services, we may automatically collect information about you, including:
- Website Requests - We log information about requests received by our websites, including your Internet Protocol ("IP") address, access times, browser type and language, device type, operating system and version, Internet Service Provider ("ISP"), location (as suggested by your IP address and ISP), the pages that you visit, the content you use and the URL of the web page you visited before navigating to the DSE Services. We also log information about whether your request originated from one of our communications, advertisements or social media posts. If you use our search web site, we log the terms or phrases you have searched for. The information we collect about Website Requests is anonymous - it is not directly linked to any personal information - except where you are using a DSE Service that requests or updates your information - for example, if your updating your email subscription. In other words, we track if you have used an online form where you provide personal information, but when you visit other pages on our web sites we track the requests anonymously and do not link them to you personally.
- Online Training Usage - In addition the information about Website Requests that we routinely collect, when you choose to access our online training services, we will collect information about your use of online courses, including access to training modules, resource downloads and responses to assessments. This information is related to your personal training account.
- Cookie Data - We may save cookies to your computer or mobile device. A cookie is a small piece of text sent to your browser by a website that you visit. It helps the website to remember information about your visit, like your preferred language and other settings. That can make your next visit easier and the site more useful to you - for example, by enabling you to access and use DSE Services without re-entering your user name/ID and/or password. We also use cookies to track the actions of individual web site users - for example, which pages they browse during a single visit. The information we collect to track web site users is anonymous - it is not directly linked to any personal information.
- Email Monitoring - If you have subscribed to our mailing list, or if we send you an automated email in the course of providing a service you have requested, we may monitor whether you have opened the email or clicked on any links contained in the email. We track email opens using web beacons (also known as "tracking pixels"). Web beacons are electronic images that may be used in emails that help us to count visits, understand usage and communications effectiveness and determine whether an email has been opened and acted upon.
- App Usage - If you access DSE Services from a mobile device using a DSE app, we collect information about the device, including the hardware model, operating system and version, unique device identifiers, mobile network information (as allowed by the mobile network) or platform information (as allowed by the specific platform type). We do not ask for, access or track any location-based information from your mobile device at any time while downloading or using our mobile apps. The information we collect about App Usage is anonymous - it is not directly linked to any personal information.
- Website Error Reports - If you access DSE websites and an error occurs, we collect information about the error, including where the error occurred (page being visited/action being taken) and including your Internet Protocol ("IP") address, access times, browser type and language, device type, operating system and version, Internet Service Provider ("ISP"), location (as suggested by your IP address and ISP). The information we collect about Website Error Reports is anonymous - it is not directly linked to any personal information. However, it is possible that personal information could be included crash reports inadvertently. For example, if an error occurred while you were entering or editing personal information.
- App Error Reports - If you access DSE Services from a mobile device using a DSE app, we collect information about crashes or other errors, including information about the error (for example, where in the app it occurred, what the app was doing at the time), the hardware model, operating system and version, unique device identifiers, mobile network information (as allowed by the mobile network) or platform information (as allowed by the specific platform type). The information we collect about App Error Reports is anonymous - it is not directly linked to any personal information. However, it is possible that personal information could be included crash reports inadvertently. For example, if an app crashed while you were entering or editing personal information.
- Third-party cookies - the use of cookies by third parties you may sign-in from into DSE Services and/or third-party applications, is not covered by our Privacy Policy. We do not have access or control over such cookies.
Unsubscribing
You may opt out of receiving newsletter and update emails from DSE by selecting the "Unsubscribe" link in any of those emails. You may also opt-out of receiving newsletter/updates emails and other promotional communications from us at any time by emailing hello@dseinternational.org with your specific request. If you opt out, we may still send you other communications, such as notices related to your access to or use of DSE Services - for example, order confirmations and replies to requests for advice.
Disabling cookies
Most web browsers are set to accept cookies by default. If you prefer, you can usually choose to set your browser to remove or reject browser cookies or to prompt you before accepting such a cookie. Please note that, if you choose to remove or reject browser cookies, this could affect the availability or functionality of DSE Services that depend on them.
Browser "do not track" options
Some browsers offer a "do not track" ("DNT") option. Because no common industry or legal standard for DNT has been adopted by industry groups, technology companies or regulators, we do not respond to DNT signals. We will make efforts to continue to monitor developments around DNT browser technology and the implementation of a standard.
Account sign-in security
We link the countries and recognised browser or DSE app families used for completed sign-ins to your DSE Client ID. We use these details to help you spot unfamiliar account use and may email every verified address on your account, or your default address if none is verified. We estimate countries from IP addresses. Locations can be wrong, and a browser family does not identify a device.
We remember each country and browser or app family for 400 UTC calendar days after its most recent sign-in. We keep its latest sign-in date, remove expired values in hourly cleanup and erase the details sooner if we erase your account record. Cleanup delays may postpone removal. We keep a record that the checks have started until we erase your account record, so a value used again after expiry can trigger an alert. Separate account-linked sign-in event records may include IP addresses and have their own 400-day retention period.
Information we collect from other sources
We may also obtain information from third parties and combine that with information we collect. This will always be in accordance with the third-party's privacy policy and any consents you have given the third-party. For example:
- Teachers, therapists and other professionals - We may collect information about your child's progress from your child's school or therapist, given your instruction and explicit consent, in order to provide advice to you.
- Donorbox - When you donate via Donorbox, Donorbox shares some of the information that you provide to them with us. For details, please refer to the Donorbox Privacy Policy.
- JustGiving - When you donate via JustGiving, JustGiving shares some of the information that you provide to them with us. For details, please refer to the JustGiving Privacy Policy.
- Virgin Money Giving - When you donate via Virgin Money Giving, Virgin Money Giving shares some of the information that you provide to them with us. For details, please refer to the Virgin Money Giving Privacy Policy.
- Social media sites - we may have access to certain information from a third-party social media service if you create or log into your online account through the service or otherwise provide us with access to information from the service - for example, if you contact us via a social media site or app or service. Any access that we may have to such information from a third-party social media service is in accordance with the privacy notice and authorization procedures determined by the social media service.
How do we use your information?
We may use the information collected through DSE Services for the limited purpose of providing those services. The information may be used for a variety of purposes, including:
- Advice Services - We use Contact Information and Advice Information to provide advice in response to your requests.
- Training Services - We use Contact Information and Online Training Usage data to provide online training services to registered participants.
- Order Processing - We use the Order Information that we collect to fulfil any orders placed through our websites (including processing your payment information, arranging for shipping, and providing you with invoices and/or order confirmations). Additionally, we use Order Information to communicate with you, screen our orders for potential risk or fraud, and, when in line with the preferences you have shared with us, provide you with information relating to our services and our work.
- Donations and Gift Aid - We use Donation Information to process and record your donation, send your receipt, manage regular gifts, answer donation queries and claim Gift Aid where you have made a valid declaration. The charity you choose to receive your donation is responsible for this use of your information. We send fundraising updates only if you ask to receive them. You can cancel a Gift Aid declaration or tell us about a change to your name, home address or tax circumstances by contacting giving@dseinternational.org.
- Research - We use Research Information to conduct scientific studies that better inform our understanding of development and education for children with Down syndrome.
- Progress Trackers, Advice and Research Information - We use Contact Information and Progress Trackers, Advice and Research Information to provide advice in response to your requests and to conduct scientific studies that better inform our understanding of development and education for children with Down syndrome.
- Communications - We use the Subscription Information you provide to communicate with you about our services and our activities, to provide updates about research and to solicit donations and fundraising support.
- Quality Improvements - We use Website Error Reports and App Error Reports to improve our web sites and apps. Error reports enable us to fix bugs and improve performance.
- Website Analytics - We use the information we collect about Website Requests and Cookie Data and App Usage to monitor the usage and performance of our web sites and services and apps. For example, we track the total number of visitors to our web sites over time and the numbers of pages our web site visitors visit. We also track how long web site pages take to load and monitor how load speeds vary between browser, devices and network locations. We track how our clients use our apps - how often, for how long and what features they use. This helps us to plan for, deliver and improve our services and products.
- Fraud Detection - We use the Website Requests data that we collect to help us screen for potential risk and fraud (in particular, your IP address).
Sharing information
We share information with selected third parties to help us deliver some of our services.
- Stripe - We use Stripe to process donation payments. We share your name, email address, billing address and donation information with Stripe for this purpose. Stripe also collects payment details and may collect transaction data and information about your browser and device, including through cookies and similar technologies. Stripe uses this information to provide and improve its services, authenticate payments and prevent and detect fraud. Stripe may process information outside your country. Read the Stripe Privacy Policy for details of its uses of personal data, international transfers and safeguards, and your rights.
- HM Revenue & Customs (HMRC) - If you add Gift Aid to a donation to Down Syndrome Education International, we share your name, home address information and donation details, including dates and amounts, with HMRC to claim Gift Aid. We also keep your declaration as evidence and may need to provide it to HMRC if it checks a claim.
- Microsoft Azure Application Insights - We also use Microsoft Azure Application Insights to collect and aggregate data about visits to our web sites and errors that may occur when visitors use our web sites. For further detail, please refer to Microsoft's information about data collection, retention and storage in Application Insights .
- Cloudflare Turnstile - We use Cloudflare Turnstile to check that some forms on our websites are completed by a person rather than by automated software, including the forms to create a DSE Client ID, reset a password, subscribe to updates, contact us and make a donation. To do this, Turnstile runs a check in your browser that processes technical information, such as your IP address and details of your browser and device. It does not receive the information you enter in the form. For further information about how Cloudflare protects privacy, please refer to the Turnstile Privacy Addendum.
- Freshdesk - We use Freshdesk to manage emails and requests for information and advice that we receive. To do this, information that you provide to us is stored and processed using their systems. For further information about how Freshdesk protects privacy, please refer to the Freshworks privacy notice.
- Shopify - We use Shopify to power our online stores. To do this, information that you provide to us is stored and processed using their systems. For further information about how Shopify protects privacy, please refer to the Shopify privacy policy.
- Thinkific - We use Thinkific to deliver our online courses. To do this, information that you provide to us is stored and processed using their systems. For further information about how Thinkific protects privacy, please refer to the Thinkific privacy policy.
- Shipping couriers and postal services - We employ a variety of shipping couriers and postal services to deliver our physical products around the world. These include UPS, FedEx, Parcelforce, USPS, Royal Mail and many more. To ship products to you, shipping information that you provide to us is stored and processed using the couriers systems. Please refer to the privacy policy of the relevant courier for further information.
- FetchApp - We use FetchApp to supply some of our digital products, such as PDF booklets. To do this, order information that you provide to us is stored and processed using their systems. For further information about how FetchApp protects privacy, please refer to the FetchApp Privacy Policy.
Security and data storage
We have implemented appropriate technical and organisational controls to protect your personal data against unauthorised processing and against accidental loss, damage or destruction. For example:
- We require all browsers to communicate with our web sites over a secure connection using Transport Layer Security (TLS) encryption. This protects the confidentiality of data you might submit to our web sites and data we provide to you as it is transmitted across the Internet.
- Most of our systems and services are securely hosted in Microsoft Azure. Azure provides highly secure hosting and data storage services and meets a broad set of international and industry-specific compliance standards, including the General Data Protection Regulation (GDPR), as well as many country-specific standards.
- We use Microsoft Office 365 services to send and receive emails, and store documents. Office 365 is a security-hardened service, managed and maintained by Microsoft.
You are responsible for choosing a secure password when we ask you to set up a password to access parts of our sites or apps. You should keep this password confidential and you should choose a password that you do not use on any other site. You should not share your password with anyone else, including anyone who works for us.
Unfortunately, sending information via the internet is not completely secure. Although we will do our best to protect your personal data in transit and once with us, we cannot guarantee the security of any personal data sent to our site while still in transit and so you provide it at your own risk. Please also note that emails are not routinely encrypted when in transit from your mail provider to ours via the Internet.
Our storage locations include Sweden, the UK, the USA and Australia.
DSE Client ID account records, including the remembered sign-in countries and browser families, are stored in Microsoft Azure in Sweden, the USA and Australia. Account-security emails also pass through our email delivery providers and the recipients' email services.
Gift Aid record retention
We keep Gift Aid claims and the details of the donations they cover for six years after the end of the accounting period in which the claim was made. We keep a declaration for six years after the end of the accounting period of the last donation it covers, and longer if a claim we still need to keep relies on it. Cancelling a declaration stops it applying to future donations but does not remove our need to keep evidence for earlier claims.
Legal grounds for using your personal data
We will only use your personal data where we have a legal ground to do so. We determine the legal grounds based on the purposes for which we have collected and used your personal data. In every case, the legal ground will be one of the following:
- Consent - For example, where you have provided your consent to receive newsletter/updates emails from us. You can withdraw your consent at any time by clicking on the "unsubscribe" link at the bottom of the email
- Our legitimate interests - Where it is necessary for us to understand our clients, conduct research, promote our services and operate our websites and apps efficiently. For example, we will rely on our legitimate interest when we analyse what content has been viewed on our sites and apps, so that we can understand how they are used.
- Performance of a contract with you (or in order to take steps prior to entering into a contract with you). For example, where you have purchased a service from us and we need to use your contact details and payment information in order to process your order and deliver your service.
- Compliance with law - In some cases, we may have a legal obligation to use or keep your personal data.
We rely on our legitimate interests in protecting DSE accounts and helping account holders recognise possible misuse when we use the sign-in information described under Account sign-in security. These security messages are separate from marketing subscriptions.
Updates, corrections and data deletion
You can ask for a copy of your personal information, ask us to correct it, or ask us to delete it or restrict its use. In some circumstances, you can also ask for a portable copy of information you have provided. These rights depend on why we use the information and are subject to legal limits. For example, we may need to keep donation and Gift Aid records to meet tax and accounting requirements. Contact us using the privacy details below to make a request.
You have the right to object to our use of your personal information where we rely on legitimate interests, and to object at any time to its use for direct marketing. You can withdraw consent where we rely on it, without affecting the lawfulness of earlier use.
If you are concerned about our use of your information, you can contact us using the details below. You also have the right to complain to the UK Information Commissioner’s Office (ICO).
You can object to our use of remembered sign-in information. Contact us using the privacy details below. We will assess your objection and stop this use unless we have compelling legitimate grounds that override your interests, rights and freedoms, or need the information to establish, exercise or defend legal claims. Deleting an account does not automatically erase security-event evidence that we still need to retain for those purposes.
Changes
We may update this privacy policy from time to time in order to reflect, for example, changes to our practices or for other operational, legal or regulatory reasons.
Contact us
For more information about our privacy practices, if you have questions, or if you would like to make a complaint, please contact us by e-mail or by mail using the details provided below:
Down Syndrome Education International 6 Underley Business Centre Kirkby Lonsdale Cumbria LA6 2DY UK
Down Syndrome Education USA 1048 Irvine Avenue, Suite 575 Newport Beach, CA 92660 USA
Down Syndrome Education Enterprises CIC 6 Underley Business Centre Kirkby Lonsdale Cumbria LA6 2DY UK
This policy was last updated on 26 October 2026.