Privacy Policy

Last updated: August 2026

Down Syndrome Medical Interest Group (UK and Ireland) — DSMIG

Information Commissioner’s Office registration number: Z7122762
Registered charity number: 1103450

DSMIG is committed to protecting the personal information you provide to us. This applies to our members, visitors to our websites, delegates and contributors to our meetings, people who purchase tickets or other items from us, and anyone who contacts us.

This Privacy Policy explains what personal information we collect, how and why we use it, how we protect it, and the rights you have in relation to your information.

DSMIG operates two closely connected websites:

www.dsmig.org.uk — our principal information, membership and resources website.
store.dsmig.org.uk — our online store, used for event ticket sales and other purchases.

Although the websites are technically separate, they are operated by the same organisation and work together. Information may be processed across both websites where this is necessary to provide membership services, event bookings, ticketing, purchases and related administration.

DSMIG is the data controller for personal information processed through these websites and through our wider activities.

If you want to change how we use your information, exercise one of your data protection rights, or ask a question about how your personal information is used, please contact us:

Email: info@dsmig.org.uk
Telephone: 0115 969 1300, extension 13268
Postal address: DSMIG, c/o Staff Library, Duncan Macmillan House, Porchester Road, Nottingham NG3 6AA

How we use your personal information
What personal information we hold about you
Special category information
Cookies and website analytics
Where we collect your personal information from
Our lawful bases for using personal information
Who we share your information with
International transfers
How we keep your personal information up to date
How we keep your information safe
How long we keep your information
Your data protection rights
How to request access to your information
What to do if you no longer want us to keep your information
What to do if you have a complaint
Links to other websites
Changes to this Privacy Policy

How we use your personal information

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

provide you with information you have requested;
help us respond to health information enquiries;
provide you with information about events, conferences and educational meetings;
provide updates on research, guidance and new developments;
invite you to participate in surveys or evaluations;
process and administer your membership application;
manage your membership account and provide access to members-only information;
keep you informed about membership matters and member-related events;
process event bookings, ticket purchases and other online transactions;
issue and administer event tickets;
contact you for help with developing our information resources or arranging educational meetings;
respond to enquiries and other correspondence;
share members’ details with other members for professional networking where the member has given permission;
reimburse expenses incurred in the course of DSMIG business;
maintain records of delegates attending our meetings, including continuing professional development records;
manage our websites and understand how they are used;
protect our websites, members and visitors from fraud, misuse, unauthorised access and other security threats;
meet our legal, financial, regulatory and charitable obligations.

We keep a record of delegates attending our meetings for meeting administration and, where applicable, for recording attendance for continuing professional development purposes.

What personal information we hold about you

We only ask you to provide information that we reasonably need for the relevant purpose or service.

We will normally ask you to provide:

your name;
your contact details.

Depending on the nature of your relationship with DSMIG or the service you request, we may also ask for:

your postal address;
your telephone number;
payment and transaction information;
your profession;
your professional registration number;
the organisation you work for;
your professional interests as they relate to Down syndrome;
your membership information and membership status;
event registration and attendance details;
ticket holder or attendee information;
correspondence and enquiries you send to us;
your communication preferences;
information required to reimburse expenses;
technical information about your use of our websites, such as your Internet Protocol address, browser type, device type and website activity;
any other information you choose to provide where it is relevant to your enquiry or participation in DSMIG’s activities.

DSMIG does not normally receive or retain your complete payment-card details. Online payments are processed through specialist payment providers such as Stripe. Those providers process your payment information in accordance with their own privacy policies and security arrangements.

Special category information

Information about health is treated as special category personal information under data protection law.

You may voluntarily provide health-related information when asking DSMIG for information or assistance. Please only provide information that is relevant to your enquiry and avoid including identifiable information about another person unless you are authorised to do so.

Where we process special category information, we will do so only where a lawful basis and an appropriate additional condition under data protection legislation apply. This may include your explicit consent or another condition permitted by law.

DSMIG does not provide individual medical diagnoses or replace advice from an appropriately qualified healthcare professional.

Cookies and website analytics

Our websites use cookies and similar technologies to provide essential website functions, support member logins, operate the online store, maintain security, remember your preferences and understand how our websites are used.

We use services including Google Analytics and Independent Analytics to obtain information about website use. Where required, non-essential analytics cookies are only used after you have given your consent.

Information collected through analytics may include pages viewed, approximate location, device and browser information, referring websites and how visitors navigate the websites.

Further information about the cookies and analytics technologies used on both websites, including how to manage your choices, is available in our Cookie Policy.

Where we collect your personal information from

We may collect personal information:

through our principal website when you become a member, update your membership information, contact us, apply to have research included on the website, or apply for a research award;
through our online store when you purchase an event ticket or another item;
through WooCommerce and Tickera when processing orders, attendee information and tickets;
through Stripe or another payment provider when you make an online payment;
through a donation service when you make a donation;
when you subscribe to a mailing list or receive communications managed through Mailchimp;
when you register for one of our meetings or events;
when you contact our information or administration team by post, telephone or email;
when you complete a meeting evaluation form, survey or other online form;
when you communicate with us through a social media platform;
automatically through our websites, including through website logs, cookies, analytics tools and security services;
from publicly available sources where it is appropriate and lawful to do so;
from another organisation where you have authorised that organisation to provide the information to us.

When you provide information through a third-party service, such as Stripe, Mailchimp, an online survey provider, a donation service or a social media platform, you should also read that organisation’s privacy information to understand how it uses your personal information.

Our lawful bases for using personal information

Data protection law requires us to have a lawful basis for each way in which we use personal information.

Depending on the circumstances, we may use your personal information on one or more of the following bases:

Contract

We may process your information where it is necessary to provide a service you have requested or to take steps at your request before entering into an arrangement with you.

This may apply when we:

administer your membership;
process an event booking or ticket purchase;
provide access to services or resources;
reimburse agreed expenses.

Legitimate interests

We may process information where it is necessary for DSMIG’s legitimate interests or those of another person, provided those interests are not overridden by your rights and interests.

Our legitimate interests may include:

responding to enquiries;
administering DSMIG and its charitable activities;
organising professional meetings and events;
maintaining accurate administrative records;
improving our websites and services;
protecting our websites and systems;
preventing fraud and misuse;
communicating with members about relevant membership matters.

Consent

We rely on your consent where this is required, including for certain electronic communications, non-essential cookies and analytics, sharing information where no other lawful basis applies, and some uses of special category information.

You may withdraw your consent at any time. Withdrawing consent does not affect the lawfulness of processing carried out before consent was withdrawn.

Legal obligation

We may process information where this is necessary to comply with a legal, regulatory, tax, accounting or reporting obligation.

Vital interests or public task

In unusual circumstances, we may process information where this is necessary to protect someone’s vital interests or where another lawful basis provided by data protection legislation applies.

Who we share your information with

We do not sell your personal information.

We do not share your information with other organisations for their own marketing purposes.

We may share personal information with trusted organisations that help us administer DSMIG or provide services you have requested. These may include:

website hosting and technical support providers;
website developers and administrators;
membership-management service providers;
providers supporting our online forms and membership system;
WooCommerce, where used to administer online orders;
Tickera, where used to administer events and tickets;
Stripe or another payment provider, where used to process payments and prevent fraud;
Mailchimp or another email service provider, where used to manage mailing lists and communications;
providers of website analytics services;
website and information-security providers, including Wordfence;
event venues, organisers or conference administration providers where necessary to manage an event;
professional advisers, accountants, auditors, insurers and legal advisers;
public authorities, regulators, courts or law-enforcement agencies where disclosure is required or permitted by law.

These providers may process personal information on our behalf only where it is necessary to provide their service. Where required, we put suitable contractual and organisational arrangements in place to protect the information.

We may sometimes ask for permission to share your contact information with another person. For example:

If you send us an enquiry, one of our members or another appropriate professional may be better placed to respond. We will ask for your permission before passing your contact details to them, unless another lawful basis clearly applies.
DSMIG members may be asked whether they want their contact details to be made available to other members in a members-only area for professional networking. Details will only be included where the member has agreed to this.

There may also be unusual circumstances in which we are required or permitted to disclose information without your consent, for example to comply with the law, a court order, a regulatory requirement or a legitimate request from the police or another competent authority.

International transfers

Some of the organisations that provide services to us may process or store personal information outside the United Kingdom.

Where a restricted international transfer takes place, we take appropriate steps to ensure the information continues to receive a level of protection required by UK data protection law.

Depending on the destination and the organisation receiving the information, these protections may include:

UK adequacy regulations;
the UK Extension to the EU-US Data Privacy Framework, where it applies;
the UK International Data Transfer Agreement;
the UK Addendum to approved standard contractual clauses;
another appropriate safeguard or lawful exception permitted under UK data protection law.

You may contact us for further information about the safeguards that apply to a particular transfer.

How we keep your personal information up to date

DSMIG has an obligation to take reasonable steps to keep the personal information it uses accurate and up to date.

We do this by:

giving you the opportunity to contact us to correct or update your information;
allowing members to update certain information through the website or a member update form;
asking you to confirm information when you contact our administration team;
updating our records when emails or other communications are returned as undeliverable;
using reliable publicly available information where appropriate;
periodically reviewing information where it remains necessary for our activities.

Please tell us if your information changes or if you believe that information we hold about you is inaccurate.

How we keep your personal information safe

We take our responsibility to keep personal information secure seriously.

Access to personal information within DSMIG is restricted to people who need it for an appropriate purpose.

We use reasonable technical and organisational measures designed to protect information from:

unauthorised access;
accidental loss;
misuse;
alteration;
disclosure;
destruction.

These measures include access controls, secure passwords, encryption where appropriate, software updates, backups, website monitoring and security tools such as Wordfence.

Our websites use encrypted connections where information is submitted online.

Where trusted suppliers process personal information on our behalf, we require them to use appropriate security measures and to process the information only in accordance with our instructions and applicable law.

No method of sending or storing information can be guaranteed to be completely secure. However, we regularly review the measures we use and take reasonable steps to protect the personal information in our care.

How long we keep your personal information

We keep personal information only for as long as it is reasonably required for the purpose for which it was collected, including any legal, accounting, regulatory or reporting requirements.

In general:

Contact details and correspondence relating to an enquiry will normally be retained until the enquiry has been dealt with and for a reasonable period afterwards where this is necessary for reference or accountability.
Information about members will normally be retained for the duration of membership and for a reasonable period afterwards where this is necessary for administration, record-keeping or legal purposes.
Information about delegates at our meetings, including names and professional registration numbers where collected for continuing professional development purposes, may be retained for five years to cover relevant professional revalidation cycles.
Order, payment and financial records will normally be kept for six to seven years where required for tax, accounting, charity or legal purposes.
Mailing-list information will normally be retained until you unsubscribe or ask us to remove it, subject to keeping a minimal suppression record where necessary to ensure we respect your request.
Website security logs are retained for a limited period appropriate to the investigation and prevention of security incidents.
Analytics information is retained in accordance with our settings and the retention periods applied by the relevant analytics service.
Information will be retained for longer where this is necessary in connection with a legal claim, safeguarding concern, regulatory requirement or other legal obligation.

When information is no longer required, we will delete it, anonymise it or securely dispose of it.

Your data protection rights

Depending on the circumstances, you may have the right to:

ask for access to the personal information we hold about you;
ask us to correct inaccurate or incomplete information;
ask us to erase your personal information;
ask us to restrict how we use your information;
object to certain uses of your personal information;
receive certain information in a portable format;
withdraw your consent at any time where we rely on consent;
object to direct marketing;
complain to the Information Commissioner’s Office.

These rights are not absolute and may be subject to legal conditions or exemptions. For example, we may need to retain certain financial records even if you ask us to delete your information.

DSMIG does not normally use personal information to make decisions about individuals solely by automated means that produce legal or similarly significant effects.

How to request access to your information

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

To make a request, please email or write to us using the contact details at the beginning of this policy. You may also use the form on our Data Access Request page.

We will not normally charge a fee for responding to a request. However, the law allows a reasonable fee to be charged or a request to be refused where it is manifestly unfounded or excessive.

We may need to ask for information to confirm your identity before disclosing personal information.

Where applicable, we will:

confirm whether we are processing your personal information;
provide a copy of the relevant information;
explain why we use it;
identify the categories of people or organisations with whom it may be shared;
explain how long we expect to retain it;
explain the relevant rights available to you.

We will normally respond within one month, although the law allows more time in certain circumstances. We will tell you if an extension is necessary.

What to do if you no longer want us to keep your information

You may ask us to delete your personal information where the right to erasure applies.

Please contact us at info@dsmig.org.uk or use the contact details at the beginning of this policy.

We may not be able to delete information where we still need it:

to comply with a legal obligation;
to maintain required financial or charitable records;
to establish, exercise or defend a legal claim;
for another reason permitted by data protection law.

Where we cannot comply fully with your request, we will explain why.

What to do if you have a complaint

If you have a concern about how DSMIG has used your personal information, please contact us first so that we have an opportunity to investigate and resolve the matter.

Email: info@dsmig.org.uk

DSMIG is not currently required to appoint a formal Data Protection Officer. Questions about your personal information may be addressed to:

Dr Liz Marder: lizmarder@dsmig.org.uk
General enquiries: info@dsmig.org.uk

DSMIG (UK and Ireland) is registered with the Information Commissioner’s Office under registration number Z7122762 and is a registered charity under charity number 1103450.

You also have the right to complain to the Information Commissioner’s Office. Further information is available from the ICO website at:

https://ico.org.uk/make-a-complaint/

Links to other websites

Our websites contain links to other websites that provide information, services, resources and fundraising opportunities.

This Privacy Policy applies to DSMIG’s principal website and online store. It does not apply to independently operated third-party websites reached through links on our websites.

We encourage you to read the privacy information provided by any external website you visit. DSMIG is not responsible for the privacy practices, content or security of independently operated third-party websites.

Changes to this Privacy Policy

We keep this Privacy Policy under regular review and may update it to reflect changes in our activities, websites, services or legal obligations.

Any updated version will be published on our websites and the “last updated” date will be changed accordingly.

This Privacy Policy is intended to provide clear and concise information about the principal ways in which DSMIG collects and uses personal information. It may not describe every individual processing activity in exhaustive detail.

Please contact us if you require any further information or explanation.

Your data

To request access to, correct, update or delete personal information that DSMIG may hold about you, please use the form on the Data Access Request page or contact us using the details at the beginning of this policy.

Improving Healthcare for People with Down Syndrome

About DSMIG