Understanding Rare
Chromosome and Gene Disorders

Data Protection & Privacy Policy

Rare Chromosome Disorder Support Group ‘Unique’
Registered in England and Wales Company Ltd by Guarantee No. 5460413
Charity No. 1110661

The Rare Chromosome Disorder Support Group (‘Unique’) takes your privacy seriously and adheres to the Principles of the Data Protection Act (DPA) 1998 (UK) and relevant European Union Data Protection Directives. Unique is registered as a Data Controller (registration number Z9206140) on the Data Protection Register which can be accessed at www.ico.gov.uk

This policy document describes which information we collect about you, how long we retain it for, who may access the information and your rights to access information held about you. Unique may change this policy at any time in line with legislative changes or changes to the policy of the organisation. Please check our website from time to time to ensure you are aware of any changes.

In this policy document:

‘we’ or ‘Unique’ means the Rare Chromosome Disorder Support Group;

‘you’ means any person(s) about whom we collect non-personal and/or personal information.

What information do we collect?

We collect several different types of information.

1. Your browsing

We collect information about the users of our website. This information is non-personal. Whenever you access our website or download information, the web server automatically records the following non-personal information: the date and time you accessed our website, how long you were on the site, your Internet domain name and the internet browser you use. This information helps us to improve our website service.

We make use of cookies. A cookie is a series of characters that is generated by our website and stored on your computer when you visit our site. The cookie does not collect or contain personal information about you, but allows us to track how often you return to our site and records our Member’s Forum login names. The cookie does not track your movements on other websites. You do not have to accept our cookie in order to be able to use our website.

2. Your contact with us

If you contact us by telephone, e-mail, facsimile or by letter, we retain a record of your contact to help us respond to enquiries, to monitor staff workloads and to evaluate and improve our service. We only collect this information if you provide it to us and we do not hold your information or images for longer than is necessary. We take precautions to ensure that your information is kept securely.

Currently we are using Google Analytics to analyze the audience of the website and improve our content. No personal information is collected from Google Analytics. For further information on the privacy policy concerning Google Analytics, please go here, http://www.google.com/intl/en/analytics/privacyoverview.html

3. Your donations and purchases

We collect information about our sources of income in order to produce accurate financial statements.
We also collect information supplied by users of our website who either donate funds to us on-line, or who purchase items through our on-line shop. This information would include your name, address, items ordered and/or donations made. Some of this information is shared with WorldPay in order to process on-line financial transactions. Your credit/debit card details are recorded on WorldPay’s secure site and we recommend that you consult WorldPay’s data protection policy at www.worldpay.co.uk.
If you make a payment or a donation by any other method e.g. post, debit order, we retain a paper record of your financial transaction only for as long as is necessary. By voluntarily submitting your personal information to us, you are consenting to the use of your personal information for effecting a payment or donation.
If you submit a signed Gift Aid Declaration to us, we retain it for HM Revenue & Customs purposes.

4. Your membership details

We collect information about our members. In order for our members to receive our magazine, we hold records of their names, addresses, telephone numbers and e-mail addresses. However, we only collect this information from you if you choose to provide it to us and we only share your name and contact details with other member families with your clear consent.

5. Your medical history and other personal details

We collect information about our members and their dependants’ karyotypes and the lifetime effects of their rare chromosome disorders.
We only collect this information from you if you choose to provide it to us. As the information you provide us is sometimes of a very personal nature, we safeguard your privacy by storing this information on a completely off-line database and we regularly review the security measures in place. Currently, only designated senior members of staff have access to this database.
This information is only ever shared in an anonymised form with medical professionals and other member families. Whenever possible we aggregate the information to further protect your identity. No personally identifiable medical information is shared with any third party. The purpose of collecting this information is to be able to provide medical professionals and newly diagnosed families with information about the potential effects of a particular rare chromosome disorder. This is particularly helpful to families and professionals where there is no published medical information about a disorder. We also use this information to connect new and existing member families who want to speak to others about a shared symptom, therapy or treatment or who live in the same geographical location so that they can find out about local services.

6. Your messages

Our website includes links to our various social media pages. Any message you post on our social media pages is considered to be ‘information’ and is recorded by us. This information is only retained for as long as is necessary. We have implemented technology to protect the privacy of our members’ messages from unauthorised access and will update these measures as new technology becomes available. We reserve the right to modify, edit or remove any unsuitable or offensive information you post on our social media pages and, if necessary, to deny you future access.

7. Our magazine and leaflets

We publish information leaflets and a magazine for our members and these may contain images and personal information of our member families. We never publish any image of or anything about you or your family without your clear consent.

8. Our staff and volunteers

We hold personal information about our staff, trustees and volunteers including information regarding their Criminal Records Bureau checks. We also hold information on recent job applicants

How long do we keep your information?

We keep your information for only as long as is necessary. You may ask us to destroy any personal information that we hold on you so that you receive no further information or contact from us. If you are a member, we will endeavour to contact you at least once a year with a complete copy of the information we hold on your family on the offline database, so that you can amend, update and add to it or have your records deleted as you choose. You may ask to have a copy of the information we hold about you and to amend, update or add to it at any time. Should you wish to restrict the use of your personal information, please contact us by email at info@rarechromo.org or in writing at the address supplied in the Contact Us section on the Unique website.

Who has access to your information?

Our members of staff have access to your personal information. Only designated senior level staff members have access to members’ medical database information.

We may use third parties (companies or volunteers) to provide services on our behalf, including packaging, mailing and delivering purchases, answering customer’s questions’ about products or services, sending postal mail, e-mails and text messages, analysing data and processing credit card payments. We will only provide those third parties with the information they need to deliver the service and they are prohibited from using that information for any other purpose. We require all such third parties to treat your personal information as fully confidential and to fully comply with all applicable UK Data Protection and consumer legislation.

We may disclose personal information if we receive a complaint about any content you have posted or transmitted to or from one of our sites, if required to do so by law or if we believe that such action is necessary to protect and defend the rights, property or personal safety of Unique, our members, any child or vulnerable adult, our staff or any visitor.

Except as indicated above we will not use or transfer this data to any third parties without your prior permission.

Can you access the information we hold about you?

Yes, you have the right to access information stored about you by Unique. You need to write to us at the address below or email us at info@rarechromo.org and pay the prescribed fee (GBP £10) to us to cover our costs (we waive the fee for our members). We will then provide you with the following information:

  • What personal data is stored
  • The purposes for which your data is being processed
  • Who has access to your data.

What security measures do we have?

We have implemented technology and policies to protect your privacy from unauthorised access and improper use and will update these measures as new technology becomes available. While we cannot ensure or guarantee that loss, misuse or alteration of data will not occur, we use our best efforts to prevent this.

Where is the information stored?

Information which you submit via our website is sent to a computer located in the United Kingdom. This is necessary in order to process the information and to send you the information you have requested. Information submitted by you may be transferred by us to our other offices and to other reputable third party organisations as referred to in this Policy, and these may be situated outside the European Economic Area.
All other information is stored either at our offices located in the United Kingdom or at a secure storage site located in the United Kingdom.

Do we collect information about children and vulnerable adults?

Yes, we collect personal and medical information provided to us by members about children or vulnerable adults in their care. We place great importance on the security and accuracy of this information and only store this information in a secure off-line database. Whenever possible, we get the consent of the guardian or responsible adult before collecting information about children and/or vulnerable adults. Our staff will make all reasonable attempts to ascertain whether a person has the necessary capacity to consent to submit their information to us. Only designated senior members of staff have access to this information. All our staff and trustees are checked with the Criminal Records Bureau.

Links to other websites

Unique’s website (www.rarechromo.org) may contain links to selected websites which we feel may be of interest. Please note that once you use one of these links to leave our website, we do not have any control over that other website. Please exercise caution and refer to their privacy policy and/or terms & conditions of use before providing any personal information as we cannot be held responsible for the protection or privacy of any information you provide to a third party.

Cookie Policy

Click here to view our Cookie policy

Any questions about privacy?

If you have any questions or concerns about how we protect your personal information, please contact us.

E-mail : info@rarechromo.org

Post :

Rare Chromosome Disorder Support Group
F4 The Stables,
Station Road West,
RH8 9EE,

Telephone: +44 (0)1883 723356

Last edited by Beverly Searle BSc(Hons) PhD CBiol MRSB 5th January 2018