TREAT-NMD Privacy Notice

Last updated: 17th September 2026

TREAT-NMD is a global network of experts in the neuromuscular field. Everyone in our network helps us work towards our mission to accelerate the development of effective treatments and establish the best in diagnosis and care for people worldwide.

At TREAT-NMD, we protect your data like it is our own. This Privacy Notice explains what personal information we collect, why we collect it, how we use and protect it, and the rights you have in relation to your personal information.

Privacy at a glance

Who uses my data?
TREAT-NMD uses your personal information to provide our services, deliver events and projects, communicate with you and fulfil our contractual and legal obligations.

What do we use it for?
We use personal information for purposes including providing requested services, administering masterclasses, conferences, webinars and eLearning, managing projects, responding to enquiries, communicating with you and, where appropriate, marketing and market research.

What happens if I contact TREAT-NMD?
If you contact us by email, through our website or by another method, we may collect and use the information you provide to respond to your enquiry and manage your communication with us.

What data do we store?
Depending on how you interact with us, this may include your name, date of birth, email address, job title, employer and company details. We may also process health and medical information in certain circumstances.

What data is shared?
We may share personal information with third parties where necessary to fulfil the purpose for which the information was collected or to meet our legal or contractual obligations. We do not sell your personal data.

How long is my data kept?
We retain personal information only for as long as needed to fulfil the purpose for which it was collected and in line with our internal retention policies.

Who can access my data?
Access to personal information is limited to those who need it to perform their role or provide the relevant service, subject to appropriate contractual, organisational and technical safeguards.

How is my data kept secure?
We use physical, administrative and technical safeguards designed to protect personal information from unauthorised access, use and disclosure. We use encryption technologies to protect data at rest and in transit.

What personal information do we collect?

Personal information is any detail that can identify you, either on its own or when combined with other details.

The personal information we collect may include:

• Your name
• Date of birth
• Email address
• Job title
• Employer’s name
• Your company’s details

This is not an exhaustive list.

We may also collect sensitive data, which is more confidential data relating to you. This may include:

• Health and medical data

Examples of this include:

• Advising us of a disability when signing up to a masterclass or conference.
• You are participating in a project, and we receive your medical information from a health professional.

How we collect personal information

We may collect personal data in the following ways:

• Newsletter sign-up
• When you register for a masterclass
• When you register for a conference
• Participating in a project, where your health professional will generally provide these details
• When you register for a webinar
• When you apply for a job
• When you send us emails
• When you consent to our taking photographs or videos
• When you request or complete eLearning courses

This is not an exhaustive list.

We only collect what is needed and no more, and we store it safely and securely.

Children and young people

Where TREAT-NMD processes personal information relating to children or young people, we will take appropriate steps to protect their personal information and process it in accordance with applicable data protection legislation.

Why we collect personal information and what we do with it

We collect personal data so we can:

• Deliver the services you have requested.
• Complete contractual obligations.
• Administer and manage events, masterclasses, conferences, webinars and eLearning.
• Manage projects and activities.
• Respond to enquiries and communications.
• Stay in touch with you about services, activities or events we think you would be interested in.
• Conduct marketing, market research and sales lead generation where we have an appropriate lawful basis to do so.

How we store and process your personal information

We take appropriate physical, administrative and technical measures to protect personal information against unauthorised access, use, alteration, disclosure or loss.

We use encryption technologies to protect data at rest and in transit.

Our role as a data controller and/or processor

Where TREAT-NMD acts as a data controller, we determine the purposes and means of processing personal information and are responsible for ensuring that the processing complies with applicable data protection legislation.

Where TREAT-NMD acts as a data processor, we process personal information on behalf of another organisation in accordance with their instructions and the applicable contractual and legal requirements.

The specific role TREAT-NMD performs will depend on the nature of the activity or project and the arrangements in place.

Legal basis for using your personal data

We only process your personal information when we have a lawful basis to do this.

Consent

We will ask for your express and informed consent every time we collect your personal data on this legal basis.

Contractual basis

We process personal data as necessary to fulfil our contractual terms with you or our clients.

Legitimate interests

We process the names, contact details, job titles and company details of our existing and prospective clients for our marketing purposes, including market research and sales lead generation.

Where we rely on legitimate interests as our lawful basis, we will ensure that the relevant processing is necessary, proportionate and balanced against the rights and interests of the individual.

How long we hold personal information

We only hold your personal data for as long as needed to fulfil the reason for needing it and in line with internal retention policies.

Once we no longer need your personal data, we will dispose of this securely.

Where different retention periods apply to different types of personal information or activities, we will retain the information in accordance with the applicable retention requirements.

Sharing personal data

We do at times share your personal information. This would be to fulfil our contracted tasks or the purpose for which we collected your personal information.

Where we share personal information with third parties, we make sure we have appropriate contractual agreements in place requiring them to protect your personal information in accordance with relevant data protection legislation.

We do not sell your personal data.

It is possible that we may need to disclose personal information when required by law, subpoena or other legal processes as identified in the applicable legislation.

We will do our best to notify you about legal demands for their personal information when appropriate in our judgment, unless prohibited by law or court order or where the request is an emergency.

Outside the UK and EU

There may be instances where we share your data outside of the UK or EU.

If this happens, we follow all relevant legislation and take appropriate steps to protect your information. This could involve removing identifying information such as your name and date of birth.

How we keep your personal information secure

We are committed to protecting the security of all of the personal information we collect and use.

We use a variety of physical, administrative and technical safeguards designed to help protect it from unauthorised access, use and disclosure.

We have implemented best-practice standards and controls in compliance with internationally recognised security frameworks.

We use encryption technologies to protect data at rest and in transit.

Your rights

Data protection legislation allows you to have certain rights relating to the personal information we hold about you. None of these rights are absolute and are subject to exceptions and limitations.

Copy of your personal data

You can request us to send you a copy of the personal information we hold about you.

Correction

You can request that the information we hold about you is corrected.

Erasure

You can request that your personal information is deleted.

Restriction

You can request that we restrict the processing of your personal information.

Transfer

You can request that personal information you have provided to us is electronically transferred to another organisation, where applicable.

Object

You can request that your personal information is not processed in certain circumstances.

Automated decision-making

You can request human involvement in decision-making where a decision is not made solely by automated means, where applicable.

If you wish to ask about these rights, please contact our Data Protection Officer using the contact details below.

Withdrawing consent and unsubscribing

If you no longer want to receive marketing emails from us or our newsletter, we understand and ask that you unsubscribe using the information at the bottom of the email you have received.

You can also contact our Data Protection Officer at dpo.support@gdprlocal.com.

Where we process your personal information based on consent, you may withdraw your consent at any time. Withdrawing consent does not affect the lawfulness of processing carried out before your consent was withdrawn.

Cookies

We also collect information about your visits to the website and applications when you land on any of our web pages through cookies and similar tracking technologies.

For further information about the types of cookies we use, please see our Cookie Policy.

Keeping this Privacy Notice under review

We keep our privacy notice under regular review to make sure it is up to date and accurate.

We will review and update this Privacy Notice when necessary to reflect changes to our data processing activities, legal requirements or how we use personal information.

Complaints

If you are concerned about how we are using your personal information or have issues with how we have responded to you while exercising your rights, you can raise a complaint directly with us using the contact details below.

If you remain dissatisfied, you can make a complaint about the way we process your personal information to the relevant supervisory authority.

In the UK, the supervisory authority is the Information Commissioner’s Office (ICO).

Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

Telephone: 0303 123 1113

Website: www.ico.org.uk

Our contact information

TREAT-NMD
4th Floor
The Catalyst
Newcastle upon Tyne
NE4 5TG
United Kingdom

Email: info@treat-nmd.com

Data Protection Officer

GDPRLocal Ltd
Adam Brogden
dpo.support@gdprlocal.com
Telephone: +44 1772 217800

GDPRLocal Ltd
1st Floor Front Suite
27-29 North Street
Brighton
East Sussex
BN1 1EB
United Kingdom

EU Representative

Under Article 27 of the GDPR, we have appointed an EU Representative to act as our data protection agent.

Instant EU GDPR Representative Ltd.
Adam Brogden
contact@gdprlocal.com
Telephone: +353 1 554 9700

Office 2
12A Lower Main Street
Lucan
Co. Dublin
K78 X5P8
Ireland

Data protection contact

If you have any questions about this Privacy Notice, how we process your personal information or wish to exercise your data protection rights, please contact our Data Protection Officer at dpo.support@gdprlocal.com.