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Important Changes to Data Protection.

7 Februar 2018

Data Protection Law is changing...... Due to changes in data protection legislation; soon the European Gaucher Alliance (EGA) won’t be able to contact you about any of our services or activities unless you explicitly give your consent. We are updating our processes and practice to ensure that we comply with the new General Data Protection Regulation (GDPR), which comes into effect in May 2018 and replaces the Data Protection Act (1998).
In other words,  regardless of where you are in the world;  as a member of the EGA if you would like to continue to use our services, receive our updates and information about our services, research and clinical trials, our events, details of fundraising activities or other items relevant to our work, we will need your explicit permission to keep in touch with you. 


What happens next? - Everybody in your organisation that communicates / works with the EGA  will receive  a letter and form(s) via Email  with a request to update their personal information and how they wish to hear from us.  You can choose how you would like to interact with us, use our services or receive information on the subjects important to you.  You can also change your mind at any time

What will happen if I don't tell you my contact preferences?
If you don't let us know how you want to hear from us, we will NOT be able to contact you or share information with you once the new regulation comes into effect in May 2018.  This may also affect access to our services.  Therefore, if you would like us to keep in touch with you, please let us know how you would like to hear from us by returning the contact forms as soon as possible.

If you don’t let us know how you want to hear from us we will have to delete your information from our database and we will not be able to contact you or share information with you once the new regulation comes into effect on 25 May 2018.
Please be aware that if you run a patient organisation within the EU, you are bound by the GDPR and it is your responsibility to ensure compliance. 

If you have any concerns or questions concerning GDPR  please contact the EGA office on 01453 7966402or via email and we shall do our best to assist you.  

Please click the link below to read more information about GDPR and download the contact

Click here to see How Do you want to hear from us - Form

Click here to see Data Protection Law is Changing.docx