Saving lives through education, advances in treatment and finding a cure for Barth syndrome
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.
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, UK.
We are affiliated to the Barth Syndrome Foundation, Inc (BSF) located in the USA. Other licensed affiliates are Barth Syndrome Foundation of Canada, Association Syndrome de Barth France and Barth Italia Onlus.
Some of the resources we offer our UK members are hosted by BSF, Inc in the USA and we direct you to their website – www.barthsyndrome.org – for further information. These include, but are not limited to, the private email forum or Listserv through L-Soft, the webmail contact form and Event Registration forms through Firespring and the Registry - www.barthsyndromeregistry.org.
By using our Website you consent to this policy.
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.
2. Your contact with us
If you contact us by telephone, e-mail, through our website (or through www.barthsyndrome.org, to whom we are affiliated) or by letter, we retain a record of your contact to help us respond to your enquiry and improve our service. This typically might include your name and contact details as well as sensitive medical information that you include. We only share this information with designated staff, authorised medical professionals and/or volunteers in order to provide you with the service or information you seek. We limit the people who have access to personal data, all of whom sign a confidentiality agreement. We take precautions to ensure that your information is kept securely.
3. Your donations
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 donate funds to us online. This information would include your name, address, and donations made. Where a donation is made using a specialist company such as PayPal, Just Giving, Virgin Money etc. some of this information is shared with them in order to process on-line financial transactions. Your credit/debit card details may be recorded on their secure site and we recommend that you consult their data protection policies. 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 newsletters – and other similar literature relevant to the services we provide, 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. You may ask us to stop sending you information, or to change the format in which we send it (e.g. change from a printed newsletter to an email format) at any time and we will act upon your instruction.
5. Your medical history and other personal details
We collect information about our members and their families’ medical history and the lifetime effects of this rare genetic disorder.
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 in a secure database and we regularly review the security measures in place. Currently, only designated senior members of staff/volunteers within licenced affiliates and BSF have access to this database.
The purpose of collecting this information is primarily:
to provide a service to you
to give you the relevant information to help you to manage and understand Barth syndrome as it affects you
to enable the Barth Syndrome Trust, Barth Syndrome Foundation and affiliates, medical professionals and scientists to learn more about Barth syndrome and how it affects families
to send you newsletters and other relevant literature
to invite you to relevant events, such as clinics and family days
to enable you to have contact with other families who are affected by Barth syndrome through our private email forum
Transfer of Data outside the EEA
If you use our service while you are outside the EEA, your personal data may be transferred outside the EEA in order to provide you with these services.
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 whatsoever for these other policies as we have no control over them.
6. Social Media
7. Our magazine, newsletters and leaflets
We publish information leaflets, and newsletters 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.
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 our 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 email@example.com or in writing at the address supplied in the Contact Us section on our website.
Who has access to your information?
Our members of staff/volunteers and trustees have access to your personal information. Only designated senior level staff members/volunteers 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 questions’ about 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 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 Barth Syndrome Trust UK, our members, any child or vulnerable adult, our staff or any visitor.
When legally required, we may disclose your information to regulatory or other official bodies.
Except as indicated above we will not use or transfer this data to any third parties (apart from BSF and licenced affiliates) 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 us. You need to write to us at the address below or email us at firstname.lastname@example.org . We will then provide you with the following information within one month of your requesting the data:
- 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 reasonable endeavours 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. Information which you submit using the BSF website https://www.barthsyndrome.org/contactbst.html is processed and stored according to their policy which can be found on their website. A copy of your email contact form is sent to the United Kingdom so that your query can be answered. We only collect the information necessary in order to process your query 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 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.
Changes to this policy
We may update these policies to reflect changes to the website and feedback. Please regularly review these policies to be kept informed of how we are protecting your personal data.
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.
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.
Thank you for visiting our site.