How we use your personal information

Introduction

This notice is for people whose personal information we use as part of SDS UK's fundraising activities.  We will update and amend it from time to time, so please check back to make sure you have read the most recent version.  The policy was last updated January 2019.

Please read this notice carefully to understand how we use your personal information and, importantly, your rights.


Who we are

We are Shwachman Diamond Syndrome UK (SDS UK, we, us, our).  We are a charity registered in England and Wales with registration number 1164269.  We are registered with the Information Commissioner’s Office with registration number ZA486479.

SDS UK supports patients and families affected by SDS in the UK.  We provide forums for families, patients and medical professionals to connect.  We promote access to health and educational services and resources. We support the development of an adult clinic and transition from paediatric to adult care.  We support research into the pathophysiology of SDS and potential treatments, in particular we are developing a dedicated UK Patient Registry. We fundraise to meet these objectives.  

People who use our website, register with us or donate

What personal information do we collect?

When you visit our website we collect the following information about your computer or device  –

●        The Internet Protocol (IP) address used to connect to the Internet.

●        Browser type (including version and plugins).

●        Operating system and platform.

We also collect the following information about your visit –

●        The full Uniform Resource Locators (URL), clickstream to, through and from our website (including date and time).

●        Products you viewed or searched for.

●        Page response times.

●        Download errors.

●        Length of visits to certain pages.

●        Page interaction information (such as scrolling, clicks, and mouse-overs).

●        Methods used to browse away from the page.

If you register with SDS UK through our website, we will collect your name, email and (optional) phone number.  We will also ask you to select on one of the following options –

●        You have SDS.

●        Your family member has SDS.

●        You are the caregiver of someone who has SDS.

●        You are a medical professional with SDS patients in your care.

●        You are a medical professional.

●        Other.

If you make a donation through our website, you will be directed to MyDonate.  You can view MyDonate's privacy notice here.   You may also make donations through Virgin Money Giving and you can view their privacy notice here.

How do we use your personal information?

We collect and temporarily log IP addresses just as part of the routine operation of our website.  We do not use them for any other purpose. We collect information about your computer or device and visit to our website to optimise your visit and improve our services.

If you register with us through the website, we will use your name, contact information to provide you with news and updates from SDS UK.

We will also hold your personal data in a database that we will use for our charitable purposes.

Legal ground for our use of your personal information

Our legal ground for using the personal information we collect through our website or received from MyDonate or Virgin Money Giving is that doing so is necessary for the purposes of the legitimate interests of SDS UK as a charity.  We will always consider your rights and privacy before using your personal information for the purposes of our business. Where your rights or privacy override our charitable interests, we will not use your personal information

Our legal ground for sending you news and updates about our charitable work is your consent.  You can unsubscribe from our mailing list at any time.

Information regarding whether you have SDS is special category personal data.  Our legal condition for using your special category personal data is your consent.   You can withdraw your consent at any time.

Separately from our solely charitable purposes, we will also use your personal information where we have a legal obligation to do so.  For example, if a regulator or official authority asks us for your personal information. In very limited situations, we may also use your personal information to exercise our legal rights (including in relation to legal proceedings).

If we collect information for one purpose and then intend to use it for a different purpose, we will seek your consent to do so and/or inform you where necessary or appropriate.

Sharing your personal information

We use IT and hosting providers to support our website.  These organisations are processors that handle your personal information on our behalf.  We have agreements in place so that these organisations only handle your personal information as we have instructed them to.  They are not able to make any further use of your personal information (except where required by law).

The processors we use include –

●        Google.

●        Squarespace.

If you make a donation through MyDonate we will receive from and share your personal data with MyDonate.

We are also registered with Virgin Money Giving and will receive from and share your personal data with Virgin Money Giving.

We do not routinely share your personal data with anyone else.  If we intend to share your personal data with anyone else, we will let you know.

Transferring information outside the European Economic Area

Some of our service providers are based outside of the European Economic Area (EEA).  For example, Squarespace's server is located in the USA.  When we send your personal information outside the EEA to a country or sector not recognised as providing appropriate protections, we either ensure that the General Data Protection Regulation (GDPR) applies to the personal information outside the EEA or we will put in place appropriate contracts approved by the EU or other safeguards to ensure your rights are protected.  Details of these safeguards are available on request.

Cookies and analytics

We use cookies to ensure that you get the most out of our website.  Cookies are small amounts of information in the form of text files which we store on the device you use to access our website. Cookies allow us to monitor your use of our website so that we can make improvements to your experience when you browse and simplify your use of our website.

If you do not wish for cookies to be installed on your device, you can change the settings of your browser or device to reject some cookies.  For more information about how to reject cookies using your internet browser settings, please consult the “Help” section of your internet browser (or alternatively visit www.aboutcookies.org).  Please note that, if you do set your Internet browser to reject cookies, you may not be able to access all of the functions of the Site and your experience may be less satisfying.

The cookies collect information in an anonymous form about visitors to the site, including what pages they visited, how long they stay on each page for and the number of clicks.  Please note that we do not use any third-party cookies.

How long we keep your personal information

We keep IP addresses and information about your visit to our website in a log for six months.

To ensure we are able to meet our legal obligations and exercise our legal rights, we will store your personal information for up to seven years after it was last potentially needed for our charitable purposes.

Individuals we work with

What personal information do we collect?

As part of our charitable work, we work with volunteers and a range of other individuals and organisations – including donors and suppliers.  We think it is important to respect the privacy of the individuals we work with.

We collect and use the following types of personal information from volunteers and others we work with –

●        Contact information (for example, address, email address and phone numbers).

●        Basic personal information (for example, name, organisation, job).

●        Details of any contact or correspondence we have had.

●        Financial details (for example, details of any payments we have made to or received from you (or your organisation).

●        Information about how you (or your organisation) use our services.

●        Personal information contained in emails we have received from your (or your organisation).


How we collect this information

We will mainly collect this personal information when you (or your organisation) or one of our customers

●        Enter into an agreement with us.

●        Enquire about our work.

●        Respond to an enquiry from us.

●        Correspond with us (email, telephone or post).

●        Are referred to us by a third party.

●        Make the information publicly available (for example, on company websites or LinkedIn).

●        Receive charitable services from us.

●        Provide services to us.

●        Through our website (please see People who use our website section of this notice).


What we use your personal information for

We use your information to -

●        Carry out our charitable work.

●        Receive services from you (or your organisation).


We may also use your information to -

●        Ensure our charity work is well targeted, relevant and effective.

●        Send news and updates about our charitable work.

●        Analyse and continually improve the charitable services we offer and our website.

●        Keep our accounts, records and databases accurate and relevant.

●        Support and manage our volunteers.

●        Fulfil our legal obligations (including where required by regulators and official authorities).

●        Exercise our legal rights (including in relation to legal proceedings).


Legal grounds for using your personal information

Where we have a contract with you as an individual, we will use your personal information where necessary for the purposes of the contract.  Importantly, if you do not provide us with sufficient and/or accurate personal information, we may not be able to enter into or fulfil a contract with you.

However, in most situations, our legal ground for the use of your personal information is that doing so is necessary for the purposes of the legitimate interests of our business.  We will always consider your rights and your privacy before using your personal information for the purposes of our business. Where your rights or privacy override our business interests, we will not use your personal information.

The legal ground for sending you updates and news about our charitable work is your consent.  You can unsubscribe from our mailing list at any time.

Separately from our solely charitable purposes, we will also use your personal information where we have a legal obligation to do so.  For example, if a regulator or official authority asks us for your personal information. In very limited situations we may also use your personal information to exercise our legal rights (including in relation to legal proceedings).

If we collect information for one purpose and then intend to use it for a different purpose, we will seek your consent to do so and/or inform you where necessary or appropriate.

Sharing your personal information

We use a number of IT, hosting and service providers to support our business.  These organisations are processors that handle your personal information on our behalf.  We have agreements in place so that these organisations only handle your personal information as we have instructed them to.  They are not able to make any further use of your personal information (except where required by law). If you would like more information about these organisations please contact us using the details below.

The processors we use include –

●        Google.

●        Squarespace.

We work with MyDonate and Virgin Money Giving to receive donations.  We share personal data with MyDonate and Virgin Money Giving where necessary to administer donations.  You can view MyDonate's privacy notice here. You can view Virgin Money Giving’s privacy notice here.

Separately from our charitable purposes, we will also share your personal information where we have a legal obligation to do so.  For example, if a regulator or official authority asks us for your personal information. In very limited situations, we may also share your personal information to exercise our legal rights (including in relation to legal proceedings).

We do not routinely share your personal data with anyone else.  If we intend to share your personal data with anyone else, we will let you know.

Transferring information outside the European Economic Area

Some of our service providers are based outside of the European Economic Area (EEA).  For example, Squarespace's server is located in the USA.  When we send your personal information outside the EEA to a country or sector not recognised as providing appropriate protections, we either ensure that the General Data Protection Regulation (GDPR) applies to the personal information outside the EEA or we will put in place appropriate contracts approved by the EU or other safeguards to ensure your rights are protected.  Details of these safeguards are available on request.


How long we keep your personal information

To ensure we are able to meet our legal obligations and exercise our legal rights, we will store your personal information for up to seven years after it was last potentially needed for our charitable purposes.

Your rights and managing your information

It is important that you are familiar with and easily able to exercise the following rights –

●        The right to be informed your personal information being used (which is what this privacy notice is for).

●        The right to access your personal information.

●        The right to object to direct marketing.

●        The right to object to the use of your personal information.

●        The right to erasure of your personal information.

●        The right of data portability.

●        The right to have your personal information rectified if it is inaccurate.

●        The right to have use of your personal data restricted.

Please be aware that these rights are not always absolute and there may be some situations in which you cannot exercise them or they are not relevant.  To help you understand how they work, we have provided links to the Information Commissioner’s Office’s guidance on each of the rights.

To exercise any of your rights please contact us using the details below.  If you are unhappy about how we have used your personal information or have any questions, please let us know.  If we are not able to resolve your concerns or answer your questions, you have the right to complain to the Information Commissioner's Office.  

Contact

You can contact us here -

philcoxes@blueyonder.co.uk (Head of SDSUK Database - Volunteer)

keithlaughton61@gmail.com (Chair)

lists@andrewolding.com (Treasurer)

juliafhawkins@gmail.com (Trustee)

kimwright1@btinternet.com (Trustee)

nicolahollands18@hotmail.co.uk (Trustee)

Please note SDS UK is not responsible for any external links.

Thank you

To Patrick O'Connell and Wiggin Associates for drafting our GDPR notice