Parathyroid UK takes the handling of personal data very seriously and treats your information with the utmost respect. Any data we hold is done so in the strictest confidence and in accordance with the General Data Protection Regulations 2018 and the UK Data Protection Act 1998.
What is data processing?
Data processing is the collecting, storing, recording and deleting of personal data.
What details do we collect?
We collect your name and email address primarily. Depending on your activity we may also have your telephone number and postal address. If you have chosen to fill in the questions on registration then we may also have basic medical details as well, such as the type of condition you have and when you were diagnosed.
How and why do we collect your details?
Parathyroid UK collects personal data from you in a number of different ways:
- Contact Details: Our main contact with you is almost entirely online. On registration, we collect your email address in order to send you information ( eg news updates or invitations to clinical trials ) and to respond to your requests for information which you send to us by email, phone or via the website. We may have your postal address and telephone number if you are a postal member or have ordered leaflets, or merchandise or used the telephone helpline for queries or support. Written notes from such calls are destroyed or kept securely until the case is closed.
- Medical Details: We collect anonymous data for monitoring purposes as no other statistics on parathyroid conditions currently exist in the UK. No one knows how many people have hypoparathyroidism in the UK, for example, so our database is an important resource. We ask you only basic medical details such as which condition you have (type of hypoparathyroidism or hyperparathyroidism) so that we can direct only the appropriate emails to you. We also ask other basic details which can help us to understand our membership’s needs and encourage researchers to address these issues. Only two administrators have privileged and strictly confidential access to full online data.
How do we store these details?
All data is held in a secure environment and treated with the utmost respect. Any information is kept on secure, password-protected computers using a fully encrypted server with access limited to executive staff members and webmaster only. We also use a variety of well regulated platforms including Mail Chimp (contact email list) and Pay Pal (banking, donations and merchandise). Written notes from telephone helpline calls are destroyed or kept securely until the case is closed.
When you register online as a member of Parathyroid UK you are accepting the terms of membership stated in the registration agreement. This sets out that we will use your email address to occasionally send you membership information, usually details about clinical trials, research news and occasional newsletters.
Any medical information you provide is done so with your consent. Parathyroid UK will never pass this information on to anyone else without your express consent.
How to contact us about your details
If you would rather not receive information from us you may, at any time, unsubscribe by sending an email via the form on the contact page.
If you need to change your contact details please send details via email to our Membership Secretary, Mandy Mainland.
You have the right to access information that Parathyroid UK holds about you. If you wish to see the details we hold or would like us to delete any information from our records, or if you no longer wish to remain a member of Parathyroid UK please use our contact form or telephone 01342 316315. Alternatively, you may write to us at Parathyroid UK, 6 The Meads, East Grinstead, West Sussex, RH19 4DF. We will act as quickly as we can to help.