Privacy Policy

Down Syndrome Medical Interest Group (UK and Ireland) DSMIG

Information Commissioner’s office Registration No. Z7122762 

Registered Charity No. 1103450

DSMIG is committed to protecting any personal information you provide to us. This applies to our members, visitors to our website, delegates and contributors to our meetings or anyone who contacts us. Our Privacy Policy 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:
  • Phone: 0115 969 1300 (Ext. 13268)
  • Postal address: DSMIG c/o Staff Library, Duncan Macmillan House, Porchester Road, Nottingham NG3 6AA


How we use your personal information

We may use personal information in a number of different ways to:

  • Provide you with information you’ve requested.
  • Help us to answer health information queries
  • Provide you with useful information about events, conferences
  • provide you with updates on research and new developments
  • produce surveys for you to participate in.
  • process your membership application and keep you informed of member related events.
  • Contact you for help with developing our information resources, arranging educational meetings or to answer queries.
  • For members only we may share details with other members for the purpose of networking, and with your permission
  • To reimburse any expenses you may have incurred in the course of DSMIG business.
  • We keep a record of delegates at our meetings for management of the meeting and for recording of attendance for continuing professional development (CPD) records for a period of 5 years.

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
  • Professional registration number
  • the organisation you work for
  • your professional interests as they relate to Down syndrome.
  • how you would like us to contact you


We collect anonymised information about your visits to our website 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:

  • Via our website when you becoming a member, apply to have your research included on the site or for our research award
  • via our PayPal account if you support us through making a donation
  • via our Eventbrite account when you register to attend one of our meetings
  • when you contact our Information team by mail, phone or email.
  • when you complete one of our online meeting evaluation forms or other surveys via SurveyMonkey.
  • when you have used a social media platform to contact us – Facebook or Twitter

When providing information to us via SurveyMonkey, PayPal, Eventbrite or social media 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

We will only contact you if we believe we have a legitimate reason to do so in accordance with the reasons described above and therefore are fulfilling a contractual obligation. Where we believe that we don’t have a legitimate interest in contacting you, we will only do so where you have given us permission, or you have provided permission to other organisations to allow us to contact you.

If you no longer want us to contact you, you can 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.

Who we share your information with

We will not share your information with any other organisation.

We may also use trusted organisations to help us administer our activities, and services you have asked us to supply to you for example:

  • agencies administer your online conference bookings e.g. Eventbrite.
  • website hosting companies which we use to administer our website content
  • email service providers to send our emails and manage your marketing permissions.

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.

There are some unusual circumstances when 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.

We will also sometimes ask if we can share your contact information with others for the purposes below, but this will only be done with your consent. We will do this in the following situations

  • If you are sending us a query we may be able to provide a better response by getting one of our members to contact you directly .We will ask your permission to do this at the time.
  • For DSMIG members we will ask when you join if we may share your details with other DSMIG members by putting your contact details in the members only area on our website area

How we keep your personal information up to date

DSMIG has a legal obligation under data protection legislation to keep the personal information it collects accurate and up to date. It helps us ensure that we do not contact you with inappropriate information. 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 email.
  • DSMIG members can update some of their own information on the members update form

How we keep your personal information safe

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

Within DSMIG 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 only for the time that is stipulated in our terms and conditions as described below .Your contact details for queries will be retained until the query has been dealt with

  • Information about members will be retained for the duration of membership
  • Information about delegates at our meetings (name and professional registration number) will be kept for 5 years, for CPD records to cover the revalidation cycle for organisations such as the GMC.
  • 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 payments.

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 no longer what us to keep your information

You have a right to erasure i.e. if you do not want us to continue to keep your personal information you may request for it to be deleted. If you wish us to do this please contact us via email

What to do if you have a complaint

If you have a complaint please contact us via

We are not required to have a Data Protection Officer, but any queries about your data should be addressed to Dr Liz Marder or via

DSMIG (UK and Ireland) is registered with the Information Commissioner’s office

Registration Number Z7122762 and registered as a charity , Number 1103450

Links to other websites

We link our website directly to other sites, including sites that provide information, services, resources and fundraising opportunities 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. DSMIG 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 DSMIG’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.

Your Data

To request or modify existing data we may have about you, please, use the form on the Data Access Request page.

We keep our privacy notice under regular review. This privacy notice was last updated on 12.5.18