PRIVACY POLICY
Our contact details
- Name: CDG UK
- Address: Meadow Lodge, Catshill, Bromsgrove, Worcestershire, B61 0JL.
- E-mail: info@cdg-uk.org
The type of personal information we collect
We currently collect and process the following information:
- Personal identifiers, contacts, and characteristics (for example, name, contact details, and CDG subtype)
- Website user statistics
How we get the personal information and why we have it
Most of the personal information we process is provided to us directly by you for one of the following reasons:
- You want to keep updated with current information about Congenital Disorders of Glycosylation and the activities of CDG UK.
- To share statistics, such as subtype frequency, (not personal identifiers) with CDG professionals and researchers.
We use the information that you have given us in order to send you information about Congenital Disorders of Glycosylation, and information about the activities of CDG UK, and to share statistics, such as subtype frequency (not personal identifiers) with CDG professionals and researchers.
Under the UK General Data Protection Regulation (UK GDPR), the lawful bases we rely on for processing this information are:
(a) Your consent. You are able to remove your consent at any time. You can do this by contacting info@cdg-uk.org.
(b) We have a legitimate interest.
How we store your personal information
Your information is securely stored.
- We keep personal identifiers, contacts and characteristics (for example, name, contact details, and CDG subtype) for an indefinite time period. This is for statistical purposes.
- We will dispose information that we no longer need by deleting your data.
Your data protection rights
Under data protection law, you have rights including:
Your right of access – You have the right to ask us for copies of your personal information.
Your right to rectification – You have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.
Your right to erasure – You have the right to ask us to erase your personal information in certain circumstances.
Your right to restriction of processing – You have the right to ask us to restrict the processing of your personal information in certain circumstances.
Your right to object to processing – You have the the right to object to the processing of your personal information in certain circumstances.
Your right to data portability – You have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances.
You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you.
Please contact us at info@cdg-uk.org if you wish to make a request.
How to complain
If you have any concerns about our use of your personal information, you can make a complaint to us at info@cdg-uk.org.
You can also complain to the ICO if you are unhappy with how we have used your data.
The ICO’s address:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Helpline number: 0303 123 1113
ICO website: https://www.ico.org.uk
