Privacy Policy

Data Controller

Lucy Doorbar

Rare Together Privacy and Data Protection Notice

Rare Together  is committed to ensuring that your privacy is protected. Any personal information that you share with us will only be used in accordance with this privacy statement. This privacy statement details how we collect information, what we do with it and what controls you have.

Who we are

Rare Together is an international support group bringing together patients with rare diseases for share support and access to market and clinical research opportunities

How we contact respondents

To request your participation in a survey or research from our records, we may contact you via email or social media.

What data we collect

As part of our research support, we will collect the following information:

– name 
– contact information including email address and telephone number
– other information relevant to our research, which may include sensitive health data

What happens to personal data we collect

Your contact information is only shared within the company and our research partner to facilitate participation in research. We do not provide your personal information to any third parties, including our clients, other market researchers, researchers and direct marketers.

Anonymity and Security

We are committed to ensuring that your information is secure. To prevent unauthorised access or disclosure, we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect.

Within Rare Together and our associates, we will share contact information and pseudonymized data via encrypted portals.

We will only share data with our clients once the material has been anonymized to remove any personal identifying information.

Your Rights

The European GDPR give everyone a number of very important rights. These are:
– Transparency over how we use your personal information (right to be informed).
– Request a copy of the information we hold about you, which will be provided to you within one month (right of access).
– Update or amend the information we hold about you if it is wrong (right of rectification).
– Ask us to stop using your information (right to restrict processing).
– Ask us to remove your personal information from our records (right to be ‘forgotten’).
– Object to the processing of your information for marketing purposes (right to object).
– Obtain and reuse your personal data for your own purposes (right to data portability).
– Not be subject to a decision when it is based on automated processing (automated decision making and profiling).

If you would like to know more about your rights under the data protection law see the Information Commissioners Office website.

If you would like to contact us regarding a specific privacy rights issue, please email Lucy@Rare-Together.com