Understanding Rare
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The Law is Changing and we’ve Updated our Privacy Policy

Unless you’ve been in hibernation for the past few months, you’ll know that data protection law in the European Union (including the UK) changes on May 25th 2018 when the ‘GDPR’ comes into force.

If you’re a member of Unique, we already have your consent to store and process the personal information you gave us when you joined. The new law makes a provision for charities like Unique to continue our work to help those with disabilities and specifically to continue to use health information, including genetic data for example, without needing to contact you to ask for your consent again. We know that you have more than enough on your plate already!

We have though asked member families to give us your updated consent to contact you about things like raising awareness, volunteering and fundraising. Many of you have done this. We will also continue to contact supporters, fundraisers and donors where we have your consent to do so. All your information is treated in confidence and we won’t bombard you! You can unsubscribe at any time.

Finally, in preparation for the new law, we have made some changes to our Privacy Policy, which explains things like what information we collect, why we collect it, how long we will keep it, who can access it and goes through your rights (e.g. the right to make us stop using or storing your information). To view the Updated Data Protection and Privacy Policy, please click here.