Privacy Policy

Privacy Notice


World Down’s Syndrome Congress 2018 hosted by Down’s Syndrome Scotland promises to respect the personal information you provide to us. We don’t want to use it in a way that you won’t expect, so our Privacy Notice explains how we protect your privacy and how you can control how we use your personal information.

If you want to change the way in which we use your data or if you have a question about how your personal information is used please contact us using any of the methods below:

Email: Rory Gaffney at
Phone: 0131 442 8840 during working hours
Postal address: Riverside House, 502 Gorgie Road, Edinburgh, EH11 3AF



  • How we use your personal information
  • What personal information we hold about you
  • Cookies
  • Where we collect your personal information from
  • How we may use your personal information for marketing
  • Who we may share it with
  • How we keep your data safe
  • How we keep your personal data up to date
  • How long we keep your data
  • How you can find out about the information we hold about you
  • What to do if you have a complaint
  • Links to other websites
  • Changes to this Privacy Notice
  • How we use your personal information


We use your personal information in a number of ways to:


  • Process your registration.
  • Provide you with the information you’ve requested.
  • Contact you with appropriate marketing messages, where you have given us permission to do so.

What personal information we hold about you?


We only ask you to supply information that we need in order to provide the service you have requested. We will normally ask you to provide us with:

your name
your contact details
Depending on the nature of your request, we may ask you for other information, where it’s appropriate and relevant, for example:

  • your address
  • your bank details
  • your profession
  • information that is relevant to the support you during the congress
  • how you would like us to contact you
  • age or date of birth, where relevant to the person with Down’s syndrome.
  • details of any accident or incident you may have been involved in while attending the congress or one of the events relating to it.



We collect anonymised information about your visits to our websites using cookies. The information is invaluable to us to improve our website and ensure you are shown relevant content. More information about how we use cookies and how you can prevent this can be found in our Cookie Policy.

Where we collect your personal information from


We collect personal information about you in several ways:

when you contact our registrations team
when you fill out an online enquiry form
when you fill out an online registration form
when you contact Down’s Syndrome Scotland directly regarding the Congress
We may collect your personal information from other organisations and sources. For example, organisations which you are a member who have signed up on your behalf. When providing information to us via these channels you should check these companies’ privacy policies and settings to understand how they use your personal information. We always check that third parties and other organisations have consent from you to pass your information on to us.

How we use your personal information for marketing and fundraising


Where we believe that we don’t have a legitimate interest in contacting you, we will only use your personal information for marketing where you have given us permission to do, or you have provided permission to other organisations to allow us to market to you.

Like all organisations we rely on marketing to help support the work we do and by using the information you provide to us we are able to contact you with specific marketing messages that we feel will be appropriate to you. Depending on the permission you have given us or another organisation this may be by post, email, telephone or social media.

We understand that our supporter’s circumstances change and you can easily withdraw the permissions you have given us, at any time either by using our contact details in this policy or by using the methods we tell you about in our communications e.g. using the ‘unsubscribe’ link on our emails.

Who we share your data with


We do not share or sell your data to any other charity or company for marketing purposes.

However, there are some situations where we use trusted suppliers to help us with administration of the services you have asked us to supply to you for example:

mailing houses to despatch our information about the event.
agencies who administer your online conference bookings.
organisations or individuals who work with us to provide services for you e.g. medical and education professionals.
website hosting companies which we use to administer our website content.
a database company who support us in keeping all our records in order.
We also use trusted suppliers to help us with marketing:

email service providers to send our emails and manage your marketing permissions.
mailing houses to send out marketing by post.
Some of our suppliers may operate outside the European Economic Area (EEA). This requires us to ensure they provide an adequate level of protection in accordance with UK data protection law, for example the EU-US Privacy Shield Framework. By submitting your personal information to us you agree to this transfer, storing or processing at locations outside the EEA.

Under some circumstances we may be required to disclose or share your information without your consent, for example if we are required by the police, the courts or for other legal reasons.

How we keep your personal information up to date


We have a legal obligation under data protection legislation to keep the personal information it collects accurate and up to date. Among other things, it helps us ensure that we do not contact you with inappropriate information and marketing messages and also prevents us from wasting valuable funds on print and postage. We keep your information accurate as follows:

by giving you the opportunity at any time to contact us to correct or change your information.
by using information publicly available to us.
if you contact our administration team we may ask you to confirm certain details.
when we receive undelivered mail or email.
How we keep your personal information safe

We take our obligations to keep your personal data safe and secure very seriously.

Within Down’s Syndrome Scotland, access to your personal information is strictly controlled on a ‘need to know’ basis. We have specific technical controls in place to restrict access and these are monitored regularly. Our website is also monitored and protected to prevent it from unauthorised access.

All personal data sent to our trusted suppliers is encrypted. In all cases we require these companies to comply strictly with our instructions and they are not allowed to use your information for their own business purposes. We also require these companies to have sufficient organisational and technical measures in place to ensure the security of your data.

How long we keep your personal information


We keep your personal information in line with our data retention policy.

In certain circumstances we have a statutory obligation to keep your personal information for a set period of time (normally six-seven years) and this mainly concerns financial information regarding your donations or Gift Aid contributions.

How you can find out about the information we hold about you


You have the right to request a copy of the information that we hold about you.

If you would like a copy of some or all of your personal information, please email or write to us using the contact details in this policy – we do not apply a charge for providing you with this information.

If we do hold information about you we will:

give you a description of it.
tell you why we are holding it.
tell you who it could be shared with.
let you have a concise and clear copy of the information.
We want to make sure that your personal information is accurate and up to date and we will be happy to correct or remove information you think is inaccurate.

What to do if you have a complaint


If you have a complaint please contact our Head of Operations by:

writing to Rory Gaffney, Head of Operations, Down’s Syndrome Scotland, Riverside House, 502 Gorgie Road, Edinburgh, EH11 3AF
or sending an email to
You can view our complaint procedure here with details of what to do if you are not satisfied with the way your complaint was handled

Links to other websites


We link our website directly to other sites, including sites that provide information, services and  resources that are not directly associated with us. This privacy notice does not cover the links within our site linking to other websites and organisations. We encourage you to read the privacy statements on the other websites you visit. Down’s Syndrome Scotland accepts no responsibility or liability for these sites.

Changes to this privacy notice


This Privacy Notice was drafted with brevity and clarity in mind. It does not provide exhaustive detail of all aspects of Down’s Syndrome Scotland’s collection and use of personal information. However, we are happy to provide any additional information or explanation needed using the contact details in this policy.

We keep our privacy notice under regular review. This privacy notice was last updated on: 5 June 2018.