Our Privacy Policy

Updated December 2018

Who is responsible for you personal data?

Spierziekten Centrum Nederland (SCN; Neuromuscular Centre Netherlands) is a collaboration of scientists and health care professionals from the university medical centres in the Netherlands with expertise in neuromuscular diseases. The aim of this collaboration is to share knowledge and means and to create added value for medical centres, scientists, and –most importantly – the patients with neuromuscular diseases.

We are a not-for-profit organisation and our registered address is Papehof 51, 1391 BE Abcoude, The Netherlands.

We control your personal data. This means we control the ways your personal data are collected and the purposes for which your personal data are used.

The personal data we collect about you?

We aim the highest standard for data privacy introduced by GDPR. We may collect, process and use your personal data either through our website (when you request information from us or when you subscribe to our newsletter Reflex), mailing or through personal contacts.

We only collect basic personal data and they do not include any special types of information or sensitive data. The personal data may include name, function, work address, email, and phone number.

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

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

  • To ensure implementation of our collaboration, as recorded in a proposal, agreement, or contract;
  • For administration purposes;
  • For purposes of the initiative SCN
  • To send newsletters and invitation to events

 Sharing your data

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

Certain personal information may also be shared with our third-party service providers (such as web hosting, newsletter software provider etc.) only for the purpose of realizing these services. As far as these third parties have access to personal data in order to execute these processing activities, they will be obligated not to use your personal data for any other purposes than that we agreed with you. We request those third parties to implement adequate levels of protection in order to safeguard your personal data.

We may share your personal data with the competent authorities, and only if we are required to do so by law.

How long do we keep your personal data?

We only keep your personal data for as long as is necessary for us to render the service you have requested or to which you given your consent, except where otherwise provide by the law.

What are your rights?

Under GDPR you are entitled to see copies of all personal data held by us and to amend, correct, delete or export such data. You can also limit, restrict or object to the processing of your data. If at any point you want to view your data, or exercise any of the above described rights, you can make a request to:

Spierziekten Centrum Nederland
Papehof 51
1391 BE Abcoude
The Netherlands.

Or by e-mail at info@spierziektencentrum.nl

When you get in touch, we will come back to you as soon as possible and within a maximum of one month. We may also ask you to verify your identity before we provide any information to you.