Privacy policy

Who is responsible for your personal data?

Spierziekten Centrum Nederland (SCN; Neuromuscular Disease Centre Netherlands) is a collaboration of scientists and healthcare professionals from university medical centres in the Netherlands with expertise in neuromuscular diseases. We are a not-for-profit organization. The aim of this collaboration is to share knowledge and resources and to create added value for medical centres, scientists, and – most importantly – patients with neuromuscular diseases.

We are responsible for your personal data. This means we determine how your personal data is collected and the purposes for which it is used.

What personal data do we collect?

We adhere to the highest standards of data privacy, as introduced by the GDPR. We may collect, process, and use your personal data through our website (e.g., when you request information from us or subscribe to our newsletter, Reflex), via email, or through personal contacts.

We only collect basic personal data, which does not include special categories of sensitive information. The personal data we may collect includes:

• Name
• Job title
• Work address
• Email address
• Phone number

Why do we need your data, and what do we do with it?

One of the main purposes of our website is to inform you about who we are and what we do. We only collect and use your personal data for one or more of the following purposes:

• To facilitate our collaboration, as outlined in a proposal, agreement, or contract
• For administrative purposes
• For activities related to the SCN initiative
• To send newsletters and event invitations

Sharing your data

We do not share your data with third parties for commercial or marketing purposes. Your personal data may only be shared in the context of specific SCN activities and collaboration opportunities.

Certain personal information may be shared with our third-party service providers (such as web hosting and newsletter software providers) solely for the purpose of delivering these services. If third parties process personal data on our behalf, they are obligated not to use it for any purposes other than those agreed upon with you. We require these third parties to implement appropriate security measures to safeguard your personal data.

Additionally, we may share your personal data with competent authorities if required to do so by law.

How long do we keep your personal data?

We only retain your personal data for as long as necessary to provide the requested service or as long as you have given your consent, unless otherwise required by law.

What are your rights?

Under the GDPR, you have the right to:

• Access copies of all personal data we hold about you
• Amend, correct, delete, or export your data
• Limit, restrict, or object to the processing of your data

If you would like to exercise any of these rights, you can make a request by emailing info@spierziektencentrum.nl.

When you contact us, we will respond as soon as possible and no later than one month from your request. We may also ask you to verify your identity before providing any information.