Privacy

Privacy c.rowland Thu, 04/15/2021 - 15:25

Introduction

This privacy policy explains how we may collect and use the information you give us. We work with your personal information so we can develop a better understanding of you and then make better marketing and service decisions, fundraise more effectively, and be more efficient in our fight of muscle-wasting conditions.

Service information we provide includes information about your condition; research information on treatments and clinical trials; opportunities to take part in patient information days, virtual seminars, and our national and Scottish conferences; and information about the help and support available and how to make the best use of it. Occasionally, we might invite you to take part in surveys to help us better understand the needs of people with muscle-wasting conditions.

Our marketing communications include information about muscle-wasting conditions, news about progress in research, updates on campaigns, opportunities to fundraise, and ways to get involved in the fight against muscle-wasting conditions. If you would like us to send you such communications, please let us know on 0300 012 0172 or supportercare@musculardystrophyuk.org.

Where we collect information

We collect personal information in a number of ways.

When you give it to us directly: you may give us your information when you request specific information, sign up for one of our events, make a donation, buy any of our products online, or when you communicate with us. We may work with a provider who will collect this information on our behalf, but please be assured we are still responsible for your data.

When you give us information indirectly: third parties, such as independent event organisers may share your information with us. These could be, for example, the London Marathon or fundraising sites like JustGiving, Virgin Money Giving, or Much Loved. They will only share your information with us if you’ve consented for MDUK to contact you. These organisations will have their own privacy policy and/or privacy statements, so please check and make sure you understand this when sharing your information.

When your information is available from other public sources: we may combine information you give us with other information available from external sources, so that we can gain a better understanding of you, and improve our fundraising methods, products and services.

You may have given permission for other organisations to share your data with third parties, including charities. This could have been when you bought a product or service, registered for an online competition or signed up with a comparison site. Based on your settings, or the privacy policies for social media and messaging services like Facebook, Instagram, LinkedIn and Twitter, you might give us permission to access information from those accounts or services.

Information that is available publicly may include that found in places such as Companies House, the Charity Commission Register, and in published articles/newspapers.

When you are using our website: as with most websites, we use “cookies” to help us make our site faster and easier for you to use. Cookies help a website to remember you. They’re small text files that sites transfer to your computer, phone or tablet. So, for example, it might automatically fill your name and address in text fields. You can read more in our Cookie policy.

The device you use to visit our website may share with us information about what type of device it is, and what operating system it uses. Your device manufacturer or operating system will have more details about what information your device makes available to us.

What information we collect

The type and quantity of information we collect, and how we use it, depends on why you are giving it to us.

If you support us, for example, by making a donation, volunteering, registering to fundraise, signing up for an event or campaigning for us, we may collect the following information, where relevant:

  • your name
  • your contact details (full address, email address and phone number)
  • your date of birth
  • your bank or credit card details
  • information relating to your health (for example, if you are taking part in a high-risk event)
  • why you have decided to donate to us.

Where appropriate, we may ask if you have an interest in a specific muscle-wasting condition and, if so, what your link to this condition is.

Occasionally, we may ask and record which ethnic group you belong to. We may also ask you for the name of your employer, or your emergency contact information for event participation.

How we use your info

We will use your data to:

  • provide you with the services, products or information you asked for
  • provide you with information about your muscle-wasting condition
  • administer your donation, or support your fundraising, including processing Gift Aid and sending you event information
  • keep a record of your relationship with us
  • make sure we know how you prefer to be contacted
  • understand how we can improve our services, products or information
  • email you about other opportunities to support us, and get involved with our activities and events.

If you would like to contact us about your marketing preferences, our Supporter Care team will be happy to answer any queries you may have. Please write to us at Muscular Dystrophy UK, 61A Great Suffolk Street, London SE1 0BU, email supportercare@musculardystrophyuk.org or call 0300 012 0172.

Muscle-wasting conditions: care and information services

We need your details, including your condition or your link to a condition, to provide you with services, respond to your queries, or give you information relevant to your condition.

We use some of the information you give us, including your age, gender, or the muscle-wasting condition you have a link to, to let you know about relevant opportunities to get involved. We will use this information to build our own picture that represents the views of all people in our community who have muscle-wasting conditions.

We will sometimes collect information about your ethnicity, to make sure we respond to the need of all of our communities. We share this information only with members of staff tasked with measuring our impact in minority communities, or with developing peer networks.

We don’t keep any medical, personal, or financial information you give to our Advocacy team with the main database; this information is only available to the team in charge of this work.

When you log in to our online forum, TalkMD, you’ll get a log-in email, with an invitation to create a user name. We advise you use a name that does not allow people to identify you, and make sure you don’t post information on the forum that you don’t want to be in the public domain. Posts to the forum are anonymous, but may to contain sensitive information. We advise users to be careful not to post any identifying information.

Asking for support

Occasionally, we may contact you to let you know about campaigns we are running or to ask for donations or other support. If you don’t want to hear from us, that’s fine. Our forms have clear marketing preference questions on them, and we include information on how to opt out every time we get in touch. Just let us know when you fill in the form, or contact us at supportercare@musculardystrophyuk.org or on 0300 012 0172.

Please get in touch if you have any questions or concerns. We do not share personal details to third parties for the purposes of marketing. Some employers also provide charitable support and we may ask you to approach them on our behalf.

Building profiles of supporters and targeting communications

We may look at how you have previously interacted with us to guide us on how you like to interact with us and the kind of support that you’re happy to offer.

We may analyse your personal information to create a profile about you, your interests and preferences. In doing this, we may look elsewhere for information about you in addition to what you have given us, for example, from public records or social media.

On digital advertising platforms such as Google AdWords and social media platforms, we may use the data you have given us to share adverts with you, or with potential supporters who have similar characteristics to yours, using tools such as lookalike and custom audiences. Where you have asked us not to use your information for targeted digital advertising, you may still see adverts related to us. This is because the social media site or advertising network may select you based on information they hold, such as your age and location, or websites you have visited; this would not be from information we’ve given. We may also use information provided by pixels, designed by individual digital and social media platforms to track your actions, so that we can create a better understanding of how to communicate with you.

Sites we do this on or may do this on, include: Google (AdWords and additional platforms), Facebook, Instagram, LinkedIn, Twitter, and YouTube. You can find the respective audience targeting policies on each individual platform.

This kind of targeting helps us make sure we send appropriate communications to our supporters, using our resources more effectively to help us improve the quality of our supporters’ experience with us.

Volunteering

Many of you are supporting the fight against muscle-wasting conditions by volunteering. Some of you sit on committees or organise fundraising events. We will record your details and contact you to send you information relevant to your chosen voluntary activity.

Some people choose to tell us about their experiences of living with a muscle-wasting condition to help raise awareness or funds. This may include sharing sensitive information related to their health and family life, in addition to biographical and contact information.

If we have the explicit and informed consent of the individuals, or their parent or guardian if they are under 18, we may make this information public at events, in materials promoting our campaigning, advocacy and support, and fundraising work, or in documents such as our annual report.

Children’s data

We collect and manage information from or about children. A parent enquiring about their child’s muscle-wasting condition usually gives us this information when children attend our events or fundraise for us.
All children under the age of 16 are excluded from our communications. Over-16s may receive information about muscle-wasting conditions or how to support the charity. Under-18s are excluded from receiving any information about our raffles and lotteries.

How we keep your info safe

We place great importance on the security of your personal information and will always take appropriate precautions to protect it.

We ensure that there are appropriate technical controls in place to protect your personal details. For example, our servers and network are protected and routinely monitored.

We always ensure only authorised personnel (staff, volunteers or contractors) have access to your information, and that they get appropriate training in how to manage your data.

We do use external organisations that collect and/or process personal data on our behalf. Before working with these companies, we perform rigorous checks to ensure they meet all relevant regulations and legislation.

We always enter into a contract with our suppliers that imposes robust data protection requirements, including the provisions of this policy, and that seeks to provide maximum protection of your personal details.

External companies that, for example, print and mail large volumes of letters, collect or process personal data on our behalf. Again, we do comprehensive checks on these companies, and enter into a contract with them, to ensure they meet all relevant regulations and legislation.

Some of our suppliers run their operations from outside the UK, inside and outside of the European Economic Area (EEA), which might lead to your personal information being transferred, processed and stored in other countries. Although they may not be subject to same data protection laws as companies based in the UK, we will take steps to make sure they provide an adequate level of protection in accordance with UK data protection law. By submitting your personal information to us, you agree to this transfer, storing or processing at a location outside the UK.

We may legally be required to disclose your details if required to by the police or for regulatory reasons. We will only ever share your data in other circumstances if we have your explicit and informed consent to do so.

How we keep your info up to date

Where possible, we try to keep your records up to date; for example, using the Post Office’s National Change of Address database. However, we really appreciate it if you let us know if your contact details change.

Your rights to your info

You retain control of your information and you have the right to ask us to stop processing your personal information, and we will do this if it’s not necessary for the purpose you gave it to us for (for example, processing your donation or registering you for an event). In some circumstances, we may legally be required to retain your personal information for audit purposes. We will discuss this with you, depending on your requirements. Please contact supportercare@musculardystrophyuk.org or call us on 0300 012 0172 if you have any questions or concerns.

You also have the right to ask for a copy of the information we hold about you. If you want to access your information, send a description of the information you want to see and proof of your identity to: HR Manager, Muscular Dystrophy UK, 61A Great Suffolk Street, London SE1 0BU.

For further information, see the Information Commissioner’s guidance. If you would like to make a complaint about how we process your personal data, please contact our Supporter Care team by email at supportercare@musculardystrophyuk.org, by phone 0300 012 0172 or by writing to Muscular Dystrophy UK, 61A Great Suffolk Street, London SE1 0BU.

If you are not happy with how we deal with your complaint, you should contact the Information Commissioner’s Office. You are also entitled to make a complaint to the Information Commissioner’s Office without first referring your complaint to us.

Changes to this policy

This policy may change from time to time. If we make any significant changes in the way we treat your personal information, we will publicise these changes clearly on our website, or we’ll contact you directly with more information.

If you have any questions, comments or suggestions, please let us know by contacting our Supporter Care team by email at supportercare@musculardystrophyuk.org, by phone 0300 012 0172 or by writing to Muscular Dystrophy UK, 61A Great Suffolk Street, London SE1 0BU.

icon_phone Created with Sketch. Contact information

MDUK helpline

info@musculardystrophyuk.org
Monday to Friday, 10am to 2pm
0800 652 6352

Cookies

Cookies c.rowland Thu, 04/15/2021 - 15:45

What are cookies?

Cookies are small text files that are sent to and stored on your computer, smartphone or other device you use for accessing the internet, whenever you visit a website. Each cookie is unique to your web browser. It will contain some anonymous information, such as a unique identifier and the site name, and some digits and numbers. Cookies are specific to the server that created them and cannot be accessed by other servers, which means that they cannot be used to track your movements elsewhere around the web.

Please note that passwords and credit card numbers are not stored in cookies.

For more information about cookies, please visit aboutcookies.org.

 

Your rights

You have the right to choose whether or not to accept cookies, and which cookies to accept. You can exercise this right by amending or setting the controls on your browser to reflect your cookie preferences. However, please note that if you choose to refuse cookies, you may not be able to use the full functionality of this website. For example, it won’t remember your details on forms between your visits, or it won’t remember your online forum login details.

Types of cookies

To fully understand cookies, here’s what you should know:

‘First party cookies’ and ‘third party cookies’

  • First party cookies are cookies served directly by the website operator to your computer. They are often used to recognise your computer when it revisits that site, and to remember your preferences as you browse the site.

  • Third party cookies are served by a service provider on behalf of the website operator, and the service provider can use them to recognise your computer when you visit other websites. Third party cookies are used most commonly for website analytics or advertising purposes. Examples of third party cookies include Google or Facebook.

‘Session cookies’ or ‘persistent cookies’

  • Your computer, smartphone or other device automatically removes session cookies once you close your browser.

  • Persistent cookies will survive on your computer until they reach an expiry date specified in the cookie itself.

Categories of cookies

Essential cookies:

  • these are essential for the user to move around the website and to use its features, for example, to make donations. These will always be in place but they do not track your data.

Performance cookies:

  • these collect information about how the user makes use of the site, for example, which pages the user visits most. These cookies do not collect information that identifies the user. We use Google Analytics to collect performance data.

Functionality cookies:

  • these remember choices the user makes and enhance the features, for example, language or user’s location. This cookie also remembers a user’s preferences for a font size, or customisable parts of a web page.

Targeting or advertising cookies:

  • these collect information about the user’s browsing habits. This may also include your use of social media sites, for example Facebook, or how you interact with our website, which it uses to show you relevant content elsewhere on the internet. Cookies may also use the info to remarket to you.

At Muscular Dystrophy UK, we use all these cookies types on our website.

 

What information do we collect?

Using cookies, we may collect some, or all, of the info below when you visit our website, depending on how you use it. We monitor how people use our website so we can improve it. If you visit our website, we may record information about your visit, including but not limited to:

  • the areas of the website you visit
  • the amount of time you spend on the site
  • whether you are new to the site or have visited it before
  • how you came to our website – for example, through an email link
  • the type of device and browser you use

We use cookies to work out how donors come to our site. For example, we use codes in our URLs to show us where a donation has come from, which gives us insight into the effectiveness of our marketing materials.

Our website uses Google Analytics to make sense of this information.

Some of our cookies will remind you about our work, and how you can help, after you have left our website.

Cookies set by third parties

Some of our web pages contain embedded content, such as a YouTube video, Twitter feed, or social media share buttons. These sites may also set cookies when you visit them. We do not control the setting of these cookies, so we suggest you check the third party website for more information about their cookies, and how to manage them.

If you do not want cookies to be stored on your PC, smartphone or other device, you can disable this function without affecting your navigation around the site.

Changing your cookie preferences

The browsers of most computers, smartphones and other web-enabled devices are typically set up to accept cookies. The “Help” menu in the toolbar of most web browsers will tell you how to change your browser’s cookie settings, including how to have the browser notify you when you receive a new cookie, and how to disable cookies altogether. For more information about managing cookies on your devices, please visit aboutcookies.org.

icon_phone Created with Sketch. Contact information

MDUK helpline

info@musculardystrophyuk.org
Monday to Friday, 10am to 2pm
0800 652 6352