Privacy Policy

MND Scotland is committed to protecting your personal information and being transparent about what we do with it. We will protect and keep the personal data you share with us safe and secure.

At MND Scotland we are committed to protecting your privacy.

The information we collect allows us to learn more about who uses and supports our charity, taking your needs and interests into account to make more informed decisions and ultimately help make life better for those affected by Motor Neurone Disease.

We will only use your personal information in accordance with all applicable laws concerning the protection of personal information and will not to do anything with your information you wouldn’t reasonably expect.

This Privacy Notice explains what information we collect, how and why we collect, how we protect your privacy and how you can control how we use your personal information.

If you have any questions about it this Privacy Policy, please contact us at MND Scotland, Unit 8, 76 Firhill Road, Glasgow, G20 7BA, email or telephone 0141 332 3903.

Who Are We?

We are MND Scotland, a registered Scottish charity (SC002662) and company limited by guarantee (SC217735) providing, support for people in Scotland affected by motor neurone disease (MND) and funding research into the condition. Our registered address is MND Scotland, Unit 8, 76 Firhill Road, Glasgow, G20 7BA. Our support is available across Scotland and includes equipment loan; peer support groups; welfare and benefits advice; counselling; complementary therapy; accessible holiday accommodation; advocacy; grants and information & education for patients and professionals. We also campaign to to raise awareness, to make the lives of people affected by Motor Neurone Disease (MND) better, and provide hope for a world without MND.

What Is Our Legal Basis For Using Your Information?

We are legally required to process some types of information in order to fulfil our statutory obligations eg Gift aid consent, Membership details, Financial records etc.

In some cases, where you have ordered a service from us such as booking one of our holiday service venues, the Lang Break or Tralee Chalet, then we are entering into a contract with you to provide that service and as such need to hold and process your information.

There are other lawful reasons for us to process your personal information. One of these is ‘legitimate interest’. This is where the reason for processing the information is seen as being necessary for MND Scotland to achieve its aims and provide and improve services to those affected by MND. Some of the legitimate interest purposes which we use to process your information include:-

  • To provide services to individuals that have been requested by them
  • To better understand the needs and issues facing those affected by MND
  • To enable us to enhance , modify, personalise or improve our services/communications to our members and supporters.
  • To seek funds to further the work of MND Scotland
  • To determine the effectiveness of our campaigns and services

Whenever we process data for these types of purposes we will ensure that we always take into account and balance your rights and interests. We will not process your data where our interests are overridden by the impact on you (unless we have your consent or are required to do so by law). You have the right to object to this processing if you wish.

In some cases we will only process your personal information where we have your consent to do so.

How Do We Obtain Your Personal Information?

We collect information in the following ways:

Directly from you.
We get information when you register to take part in fundraising events, fundraise on our behalf, make a donation to us, enquire and ask for support from the services which we offer such as welfare and benefits, counselling, complementary therapy, AAC, equipment loan, advocacy etc. When you apply for a welfare grant or register to attend a support group. Apply for research funding or make application for a job. When you apply to become a member or volunteer. When you contact our office or staff via mail, phone or email about how MND Scotland can support you, your family or friends. When you complete one of our online or paper-based surveys. When you use a social media platform to contact us eg Facebook, Twitter etc.

From Third Parties
We receive information from third party organisations such as fundraising sites like Just Giving or Virgin Money where you have indicated that you wish to support MND Scotland and have given them permission to pass your information on to us. We may also obtain information about you from a family member or a friend who contacts us on your behalf. Your information will be passed to us when you have given your permission for your MND clinical specialist or other health and social care professional to refer you to one of our services.

Our Website
To help improve the services we offer, we use information gathered from our website on which pages people visit most often, which events and services are of most interest. This information is generally aggregated and we do use it to identify individual visitors unless you provide your details in one of our online forms.

Our website uses ‘cookies’ which aim to make your visits to our website faster and easier. MND Scotland uses cookies to ensure that you can interact with our web sites successfully, to identify you when you visit our web sites and to keep track of your browsing patterns. The use of cookies does not give us access to the rest of your computer.
If you want to prevent our cookies being stored on your computer in future, you may do so by referring to your internet browser’s instructions. You can do this by clicking on the “Help” menu. Please note however that if you disable our cookies you may not be able to access certain services or facilities on our sites and your use of our sites may be restricted. Further information on deleting or controlling cookies is available at

If you make a donation online or purchase a product from us, your card information is not held by us, it is collected by a third party payment processor who specialises in the secure online capture and processing of credit/debit card transactions.

Our website includes links to other sites, not owned or managed by us. We cannot be held responsible for the privacy of information collected by websites not managed by us.

Publically Available Information.
From time to time we may obtain information from websites such as Companies House or publically available newspaper articles.

What Information Do We Collect?

We will only ask you to supply the information that we need in order to provide you with the service or support that you are requesting. What information is collected will vary depending on what it is for.

Generally we will ask you to provide:-

  • Your name
  • Your contact details

Where appropriate and relevant, we may ask for additional information such as:-

  • Information about your suitability or eligibility for a service – for example: information about your MND and the treatments you receive, to help us provide relevant information or support and tailor our services to meet your needs.
  • Information about your financial circumstances, so that we can help with identifying appropriate financial support and benefits that may be available to you.
  • how you would like us to contact you ie via email, post, telephone etc
  • your bank details
  • your age or date of birth, where relevant to your participation in an event or activity or for access to services and benefits
  • Sensitive information such accessibility or medical information where relevant to the service being requested or your participation in an event.

How Do We Use Your Information?

How we use your information depends largely on why you are providing it. We may use your information in the ways set out below.

  • We use your personal information to give you the information, support, services, or products you ask for.
  • We use your information to gain a full understanding of your situation so we can develop and offer you the best possible personalised services.
  • We use your information to keep a record of your relationship with us and for internal administrative purposes (such as our accounting and records), and to let you know about changes to our services or policies. We use your personal information look into, and respond to, complaints, legal claims or other issues.
  • We use your personal information to claim Gift Aid on your donations.
  • We use the information you provide to complete financial transactions i.e. SagePay, WorldPay, PayPal when event bookings are made or orders are placed through the online shop
  • We use personal data to carry out statistical analysis and research in order to help us to understand how we are performing and how we can improve our services and meet the needs of people that require our help.
  • We may also use your personal information for other purposes which we specifically notify you about and, where appropriate, obtain your consent.
  • We may use your information to send you communications about our work and how you can help us to help you, for example, information about our campaigns, volunteering and fundraising activities and how you can donate to us. You can let us know if you would prefer not to receive these communications at any time.
  • Sharing your story and knowledge. A number of families choose to share their experience of MND with us to help us in our work. These stories are often featured in case studies in our publications, online and with the media. This could include sensitive information relating to their health and family. We will only share this information if we have received full written consent from the family or individual involved.


Who Do We Share Your Information With?

We will not sell your details to any third parties.

When you have requested a service that is provided by a third party, ie counselling, physiotherapy, complementary therapy, then we will only pass on the details that are relevant to ensure that the service that is provided is relevant and appropriate.

Where it is appropriate and you have given us your permission to do so, we will share information with your MND clinical team.

We sometimes share your information with associated organisations who we contract with to carryout surveys with the aims of identifying needs and improving services to those affected by MND.

When you book to take part in one of our events or place an order through our online shop, your financial information is securely processed by a third party such as SagePay, WorldPay or PayPal.

Where you have indicated that you wish to receive mailings from us eg our Aware newsletter, we will pass on your contact details to the mailing company who will process the mailing on our behalf. We require these companies to comply with our instructions. They are not allowed to use the information we provide for their own business and they must destroy your contact details once the mailing has been sent.

How Do We Keep Your Information Safe?

When we collect your personal information we use strict procedures and security features to make sure that only those who are authorised to access your information can. Any personal information is kept only for as long as is necessary for the purposes for which it was collected.

Our website and our computer systems all have appropriate cyber security systems in place to protect the data that they hold. When making a payment or donation through our website we use a secure server to ensure that your details are protected.

If You're 16 Or Under

Children under 16 often take part in fundraising events for us. We collect the same basic information from them as we do for adults but with the addition of requiring a parent or guardian’s permission and email address. For those children aged 16 or under who we are asked to provide support to eg counselling, we will obtain the consent of a parent or guardian before collecting and sharing personal information to service providers about the child. We will work to the same stringent information governance guidelines for both adults and children.

Accessing And Updating Your Personal Information

You can request a copy of the information we hold about you. If you would like a copy of some or all of your personal information, please complete and send our subject access request form to us or contact our Data Protection Officer at MND Scotland, Unit 8, 76 Firhill Road, Glasgow, G20 7BA, email or telephone 0141 332 3903.

If we do hold information about you we will:

  • give you a description of it.
  • tell you why we are holding it.
  • tell you who it could be shared with.
  • let you have a concise and clear copy of the information.

We want to make sure that your personal information is accurate and up to date and we will be happy to correct or remove information you think is inaccurate.

You can also let us know if you would no longer like to receive fundraising communications from us by emailing, calling us on 0141-332-3903, or writing to our Data Protection Officer at the above address.

Changes To This Policy

We keep our privacy policy under review and may change it from time to time so please check back periodically. If there are significant changes to this policy we will notify you via your email address or by placing a prominent notice on our website.

This Privacy Policy was last updated May 2018. Address change in March 2021.