The Smith-Magenis Syndrome Foundation UK
Registered UK Charity 1072573 (CIO 1186647) | Registered Scottish Charity SC044841
We may request your email address or mailing address for the purposes of adding you to our mailing list, processing a membership request, or by your request to have someone contact you for additional information. Whenever we request the identity of a visitor, we will clearly indicate the purpose of the inquiry before the information is requested. We maintain a strict “no spam” policy that means we will not sell, rent, or otherwise give your email address to a third-party, without your consent. Additionally, we will not send you any emails that you have not agreed to receive.
Where you have given us permission you may be contacted with announcements, news, or about new products or services.
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. The SMS Foundation 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 ‘SMS Foundation’ means the Smith-Magenis Syndrome Foundation UK;
‘you’ means any person(s) about whom we collect non-personal and/or personal information;
‘staff’ means any person accountable to the charity for its organisation, operation and/or service delivery, irrespective of paid or voluntary and includes trustees, members of the board, and those co-opted to achieve these objectives.
What information do we collect?
We collect several different types of information
- 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.
- Your contact with us
If you contact us by telephone, e-mail 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.
- Your donations and purchases
We collect information about our sources of income in order to produce accurate financial statements.
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.
- Your membership details
We collect information about our members. In order for our members to receive our publications, 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.
- Your medical history and other personal details
We collect information about our members and their dependants’. 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 Smith-Magenis syndrome. This is particularly helpful to newly diagnosed families and professionals. 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.
- 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.
- Our booklet and leaflets
We publish a booklet and information leaflets 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.
- Our staff and volunteers
We hold personal information about our staff, trustees and volunteers as necessary for the functionality and legal compliance of the organisation.
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 periodically to confirm or amend the details we hold on your family. 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 (http://www.smith-magenis.co.uk).
Who has access to your information?
Those who have responsibility for the running of the organisation have access to your personal 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 the SMS Foundation, 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?
Individuals have the following rights:
- the right to be informed;
- the right of access;
- the right to rectification;
- the right to erasure;
- the right to restrict processing;
- the right to data portability;
- the right to object; and
- the right not to be subject to automated decision-making including profiling.
Additionally, you have the right to access information stored about you by The SMS Foundation. You need to write to us at the address below or email us at firstname.lastname@example.org and pay the prescribed fee (GBP £10) to us to cover our costs (we waive the fee for our members). We endeavour to reply within 30 days, providing 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 bases of operation 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 bases of operation 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 trustees have access to this information. We adhere to a strict safeguarding policy to protect children and vulnerable adults.
Links to other websites
Any questions about privacy?
If you have any questions or concerns about how we protect your personal information, please contact us.
BCM Smith-Magenis Syndrome Foundation
0300 101 0034
Please note: This is an answerphone service that will alert us as soon as a message is left. A trustee will call you back as soon as possible – we aim to respond to messages within 24 hours.