Saving lives through education, advances in treatment and finding a cure for Barth syndrome
Terms and conditions
Information about us
www.barthsyndrome.org.uk is a site operated by The Barth Syndrome Trust (BST). We are a charity registered in England and Wales under charity number 1100835 and have our registered office at 1 The Vikings, Romsey, Hampshire, SO51 5RG.
The Barth Syndrome Trust is affiliated to the Barth Syndrome Foundation, Inc (BSF), a charity registered in the USA as we believe that working together maximises our success. For this reason, we sometimes share essential information between authorised representatives of the licensed affiliates. Also, some links on our website are to the BSF website.
The Barth Syndrome Trust (BST) website is designed for educational purposes only and is not intended to serve as medical advice. The information provided on this site should not be used for diagnosing or treating a health problem or disease. It is not a substitute for professional care. If you suspect you or your child(ren) may have Barth syndrome, you should consult your health care provider.
- For the purpose of the DPA and GDPR we are the data controller and any enquiry regarding the collection or processing of your data should be addressed to M Damin at our address 1 The Vikings, Romsey, Hampshire, SO51 5RG
- By using the Website you consent to this policy.
Information we collect
- We will collect personal data on this Website only if it is directly provided to us by you the user, e.g. your e-mail address, name, home or work address and telephone number, and therefore has been provided by you with your consent. Normally you will only provide such details if you wish to sign up for our free e-newsletter or other resources, or are making a purchase from us.
- We also use analytical and statistical tools that monitor details of your visits to our website and the resources that you access, including, but not limited to, traffic data, location data, weblogs and other communication data (but this data will not identify you personally).
- Your payment information (e.g. credit card details) provided when you make a purchase from our website is not received or stored by us. That information is processed securely and privately by the third party payment processors that we use. The Barth Syndrome Trust will not have access to that information at any time. We may share your personal data with our payment processors, but only for the purpose of completing the relevant payment transaction. Such payment processors are banned from using your personal data, except to provide these necessary payment services to us, and they are required to maintain the confidentiality of your personal data and payment information.
Use of your information
- We may hold and process personal data that you provide to us in accordance with the DPA and GDPR.
- The information that we collect and store relating to you is primarily used to enable us to provide our services to you, and to meet our contractual commitments to you. In addition, we may use the information for the following purposes: to notify you about any changes to our website, such as improvements or service/product changes, that may affect our service; if you are an existing customer, we may contact you with information about goods and services similar to those that were the subject of a previous sale to you; where you have consented to receive such information, to provide information on other parties’ products or services that we feel may be of interest to you; where you have consented to receive our e-newsletters, from time to time to provide that to you.
Disclosure of your information
- We may disclose your information to regulatory bodies to enable us to comply with the law and to assist fraud protection and minimise credit risk.
- Where you have consented for us to do so, we may provide your data to selected third parties who may contact you about their goods or services that you may be interested in.
- If you do not want us to use your data for our, or third parties’ use, you will have the opportunity to withhold your consent to this when you provide your details to us on the form on which we collect your data, or you can do so by writing to us at the address detailed in clause 2, or sending us an email to firstname.lastname@example.org at any time.
Controlling the use of your data
- If you have given us consent to use your data for a particular purpose you can revoke or vary that consent at any time. If you do not want us to use your data or want to vary the consent that you have provided you can write to us at the address detailed in clause 2 or email us at email@example.com at any time.
Where we store and transfer your data
- As part of the services offered to you, for example through our Website, the information you provide to us may be transferred to and stored in countries outside of the European Economic Area (EEA) as we use remote website server hosts to provide the website and some aspects of our service, which may be based outside of the EEA, or use servers based outside of the EEA - this is generally the nature of data stored in “the Cloud”. It may also be processed by staff operating outside the EEA who work for one of our suppliers or licenced affiliates, e.g. our website server host, or work for us when temporarily outside of the EEA.
- We do not use or disclose sensitive personal data, such as race, religion, or political affiliations, without your explicit consent.
- Otherwise, we will process, disclose or share your personal data only if required to do so by law or in the good faith belief that such action is necessary to comply with legal requirements or legal process served on us or the website.
- You have the right to opt out of our processing your personal data for marketing purposes by contacting us at firstname.lastname@example.org.
- The transmission of information via the Internet or email is not completely secure. Although we will do our best to protect your personal data, we cannot guarantee the security of data while you are transmitting it to our site; any such transmission is at your own risk. Once we have received your personal data, we will use strict procedures and security features to try to prevent unauthorised access.
- Where we have given you (or where you have chosen) a password so that you can access certain parts of our site, you are responsible for keeping this password confidential. You should choose a password that is not easy for someone to guess.
Third party links
- You might find links to third party websites on our website. These websites should have their own privacy policies, which you should check. We do not accept any responsibility or liability for their policies whatsoever as we have no control over them.
- The DPA and GDPR give you the right to access information held about you by us. Please write to us or contact us by email if you wish to request confirmation of what personal information we hold relating to you. You can write to us at the address detailed in clause 2, above, or by email to email@example.com. There is no charge for requesting that we provide you with details of the personal data that we hold. We will provide this information within one month of your requesting the data.
- You have the right to change the permissions that you have given us in relation to how we may use your date. You also have the right to request that we cease using your data or that we delete all personal data records that we hold relating to you. You can exercise these rights at any time by writing to us at the address detailed in clause 2, above, or by email to firstname.lastname@example.org.
Changes to this policy
- We may update these policies to reflect changes to the website and customer feedback. Please regularly review these policies to be informed of how we are protecting your personal data.
Version: February 2018
Information we collect
When you contact us, your e-mail address, web name and other information included in your e-mail may be forwarded through the site to the appropriate person(s) within The Barth Syndrome Trust or Foundation, Inc. for a response. Copies of your correspondence may be retained at the BST/BSF home office and by the responding individual. BST/BSF may establish and maintain lists of our members including families, physicians, scientists, contributors and others interested in Barth syndrome to allow us to communicate with you. These lists will not be sold, rented or given to any third party for commercial use, nor do we currently expect to release these lists to any third party for any reason. However, if we see a need or a possible benefit to you of making your personal information available to a third party, we will not do so without first identifying the recipient and providing a full explanation to you, and receiving your permission to do so in advance of each instance.
How we may use your information
We use some of the information included in your e-mail message (e.g. your web name and address, including your internet service provider) to track usage of our web site and improve its value to you. We compile statistics that show the daily number of visitors to our site, the daily requests for particular files on the site, the countries that requests are coming from, and browser and operating systems used. These statistics are used internally to help us improve the content and scope of the site. These statistics contain no personal information and cannot be used to gather such information. We may use this information to communicate with you, but will not distribute this information outside of BST or use it for any other purpose without your permission.
The Barth Syndrome Trust is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programmes. Every reasonable effort will be made to maintain the security of all personal information in our possession. Access to personal information will be limited to Board members and individuals who have a need to use such information in the course of their work on approved projects for and overseen by the Barth Syndrome Trust and who have been instructed in the confidentiality requirements of the organisation.
Accessing our site
Access to our site is permitted on a temporary basis, and we reserve the right to withdraw or amend the service we provide on our site without notice (see below). We will not be liable if for any reason our site is unavailable at any time or for any period.
We do not guarantee that the information contained on our site is accurate, verified or complete. We therefore disclaim all liability and responsibility arising from any reliance placed on such materials by any visitor to our site, or by anyone who may be informed of any of its contents.
We do not guarantee that the functions or materials accessible from or contained in the site will be uninterrupted or error free, that defects will be corrected, or that the site or the server that makes it available are free of viruses or faults.
You are responsible for ensuring that your computer system meets all relevant technical specifications necessary to use the site and is compatible with the site. You are also responsible for implementing sufficient procedures and virus checks to satisfy your requirements.
We aim to update our site regularly, and may change the content at any time. If the need arises, we may suspend access to our site, or close it indefinitely. Any of the material on our site may be out of date at any given time, and we are under no obligation to update such material.
In circumstances where you suffer loss or damage arising out of or in connection with the use of the site, we accept no liability for this loss or damage.
A cookie is a small file which asks permission to be placed on your computer's hard drive. Once you agree, the file is added and the cookie helps analyse web traffic or lets you know when you visit a particular site. Cookies allow web applications to respond to you as an individual. The web application can tailor its operations to your needs, likes and dislikes by gathering and remembering information about your preferences.
We use traffic log cookies to identify which pages are being used. This helps us analyse data about web page traffic and improve our website in order to tailor it to customer needs. We only use this information for statistical analysis purposes and then the data is removed from the system.
Overall, cookies help us provide you with a better website, by enabling us to monitor which pages you find useful and which you do not. A cookie in no way gives us access to your computer or any information about you, other than the data you choose to share with us.
You can choose to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. This may prevent you from taking full advantage of the website.
Viruses, hacking and other offences
You must not misuse our site by knowingly introducing viruses, trojans, worms, logic bombs or other material which is malicious or technologically harmful. You must not attempt to gain unauthorised access to our site, the server on which our site is stored or any server, computer or database connected to our site. You must not attack our site via a denial-of-service attack or a distributed denial-of-service attack.
By breaching this provision, you may commit a criminal offence under the Computer Misuse Act 1990. We will report any such breach to the relevant law enforcement authorities and we will co-operate with those authorities by disclosing your identity to them. In the event of any breach of this provision, your right to use our site will cease immediately.
We will not be liable for any loss or damage caused by a distributed denial-of-service attack, viruses or other technologically harmful material that may infect your computer equipment, computer programs, data or other proprietary material due to your use of our site or to your downloading of any material posted on it, or on any website linked to it.
Links to our site
You may link to our home page, provided you do so in a way that is fair and legal and does not damage our reputation or take advantage of it, but you must not establish a link in such a way as to suggest any form of association, approval or endorsement on our part where none exists.
You must not establish a link from any website that is not owned by you.
Our site must not be framed on any other site. We reserve the right to withdraw linking permission without notice.
Links from our site
Where our site contains links to other sites and resources provided by third parties, these links are provided for your information only. We have no control over the contents of those sites or resources, and accept no responsibility for them or for any loss or damage that may arise from your use of them.
Intellectual property rights
We are the owner or the licensee of all intellectual property rights in our site, and in the material published on it. Those works are protected by copyright laws and treaties around the world. All such rights are reserved.
You must not modify the paper or digital copies of any materials you have printed off or downloaded in any way, and you must not use any illustrations, photographs, video or audio sequences or any graphics separately from any accompanying text.
Our status (and that of any identified contributors) as the authors of material on our site must always be acknowledged.
You must not use any part of the materials on our site for commercial purposes without obtaining a licence to do so from us or our licensors.
Barth Syndrome Trust (BST) and the accompanying logo and all other BST trade names, logos or project names are our registered or unregistered trademarks and/or other intellectual property of BST or third parties. You may not copy, use or reproduce these without our prior written consent.
Jurisdiction and applicable law
If you have any concerns about material which appears on our site, please contact email@example.com.
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