The DICE EDS & HSD Global Registry Privacy Statement

Updated on June 12, 2022

GDPR Data Privacy Addendum (for European Union)

As a citizen or resident of the European Union, you are protected by the EU’s General Data Protection Regulation (GDPR).  The Ehlers-Danlos Society manages the DICE EDS and HSD Global Registry for the purpose to encourage research into these conditions. The registry is hosted on the secure internationally renowned REDcap platform and our data is stored on the AWS secure cloud storage.

You have these rights under GDPR:

The European Union has not confirmed that the United States has mandated an adequate data protection level. The measures we will take in protecting your data goes beyond that mandated by law in the United States.

For further information on how we will use your personal data, please see our privacy notice here.

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