We always recommend that our volunteers, donors and other interested parties read this privacy notice in full. It explains who we are, how and why we collect personal data from you, how and why it will be processed by us and our commitment to protecting your data.
In case you do not have time to read it in full we have summarised the key points for you in our ‘Speed Read’ section below.
- Myelopathy.org (we, our or us) is a registered charity, number 1178673.
- We take our approach to data protection and protecting your privacy seriously. You can contact us at with any related queries.
- We process (i.e. handle) your personal data to provide our services to you and our beneficiaries. Under data protection laws, we are only permitted to process your personal data where we have a legal basis for doing so. We will only ever process your personal data in compliance with applicable law.
- We will keep your data for as long as we provide services to you. We will then keep data either as we are required to legally (eg for six years for Gift Aid declarations) or for two years from the date of our last interaction with you
- In order to process your data, we may, on occasion, transfer your data outside the UK and possibly outside the European Economic Area (EEA). If we do this, we will ensure that the transfer mechanism provides an adequate level of protection, which is fully acceptable within UK Data Protection Legislation and compliant with guidelines issued by the European Commission.
- You have important rights under laws aimed at protecting your personal data. This policy sets out your rights and how you can exercise them. For more information, see below in the ‘Your Information Rights’ section. You also have the right to make a complaint to the Information Commissioner’s Office if you are unhappy with how we have handled your personal data. For more information, see below in the ‘Your Information Rights’ section
Full Privacy Notice
This notice explains how we collect data, how we use and store information and what it means for you. It also explains your rights in relation to the personal data we hold about you. We are committed to protecting the privacy and security of your personal information. We welcome any feedback on our actions.
Who We Are
Myelopathy.org is a charitable incorporated organisation dedicated to Degenerative Cervical Myelopathy (DCM) by providing support, awareness and research for and into the condition.
We are a charity registered in England and Wales (number 1178673). We are not registered with the Information Commissioner as we are exempt as a not-for-profit organisation.
For the purposes of this Policy, ‘us’, ‘we’ and ‘our’ refer to Myelopathy.org.
What Information Do We Collect
We collect personal information each time you deal with us. For example, when you email us with a query, buy one of our products through social media, sign up for a newsletter, fill in forms on our website, apply to become a volunteer or for a job with us, financially support us or otherwise provide your personal details, we collect the information you provide, such as your name, contact details and IP address. Occasionally we collect information given to us by a third party (for example, details of referees) or that is publicly available (for example, details in relation to potential corporate supporters).
We may use the personal data we collect to:
- Run and administer Myelopathy.org including; processing and delivery of orders, provision of our service, development of services, organising events and volunteer teams, recruiting volunteers and paid workers, administering donations, monitoring and evaluating the effectiveness of our work.
- Provide news and information about our services and organisation and undertake surveys to understand the difference Myelopathy.org makes and how we can improve it.
- Contact supporters to raise and process funds and other donations given in support of Myelopathy.org.
- Ensure that content from our website is presented most effectively for you and your computer, making the website easier for you to use and providing you with access to all parts of the website; administer our website and for internal operations including troubleshooting, data analysis, testing, research, statistical and survey purposes; to improve our website to ensure that content is presented most effectively for you and your computer; to keep our website safe and secure.
Basis of Processing Your Data
Consent: We will process your personal data where you have given us consent for the specific purposes which we have told you about. For example: Sending out our newsletters; Direct marketing and raising funds for Myelopathy.org through telephone, email or SMS; Use of a case study if you are a service user (including photographic images).
Legitimate Interest: We will rely on our legitimate interests to ensure the smooth administration, running and development of Myelopathy.org’s network services to collect and process the personal data you supply us when your interests and fundamental rights do not override these legitimate interests. For example: When you purchase a product; Email us with a query; Volunteer; Apply to become a paid worker; Act as a referee; Make a gift; Are a potential or actual corporate supporter.
Legal Obligation: We are required by law to keep various business, HR and charity records and certain records for health and safety purposes. We will process personal data when necessary to comply with our legal obligations. For example, to comply with HMRC regulations in relation to processing gift aid.
You are free to request access, update, change your preferences, unsubscribe, withdraw your consent, object to us processing your data at any time by contacting us.
Volunteering or Applying for a Paid Role with Us
When you provide us with personal data when you apply for a paid role with us, such as the information on your CV, we will process, store and disclose the personal data we collect to: Support the recruitment process; Enable you to submit your CV and application; Answer any questions you may have; Use third parties to provide services such as references, qualifications and verification of information you have provided; Provide anonymised data to monitor compliance with our equal opportunities policy.
Where you provide personal data to volunteer with us, we will store, process and disclose personal the personal information we collect to: Support the volunteer recruitment process; Answer any questions or feedback you may have; Use third parties to provide services such as references; Deliver the volunteering opportunity; Provide information and the administration of the volunteering opportunity; Monitor the quality of the volunteering opportunity.
Ordering a Product through Our Facebook Page
When you provide us with personal data when you order one of our products online, such as your name, email address address and telephone number, we will process, store and share the personal data we collect to: Process the order; Deal with any queries; Arrange collection or delivery of the order; Monitor the quality of the service.
How and Where We Store Your Information
We will keep your personal information only for as long as we consider it necessary to carry out the purposes we collected it for, to meet any legal obligations, accounting and tax and contractual considerations as well as providing our services and running the charity. Financial information will be kept up to a period of six years, and supporter information for up to a period of three years to deal with any queries or complaints.
Any third parties that we engage will keep your data stored on their systems for as long as is necessary to provide the relevant services to you or us. If we end our relationship with any third-party providers, we will make sure that they securely delete or return your personal data to us.
If you have any questions about how long we keep your data, please contact us.
We may retain personal data about you for statistical purposes. In these instances, it will be anonymised meaning that you will not be identifiable from the data.
We have in place appropriate controls to protect any personal data you provide.
We ensure that access to personal data is restricted only to those volunteers or workers whose roles require such access and that suitable training is provided for these volunteers or workers.
We may at times use external companies to process personal data on our behalf; ensuring we use those who have adequate privacy policies in place and are available on their websites to see.When we use these companies, we remain responsible for the storing and processing of the personal data you give us.
However, we need to remind you that despite our efforts, the internet cannot be guaranteed to be 100% secure and that you submit data at your own risk.
Where We Store Your Personal Information
When we share your information we do not share or swap your information with any other charities or third party marketing organisations.
We may need to pass on information if required by law or by a regulatory body. For example, information relating to Gift Aid requested by HMRC.
We may employ or contract third-party service providers who assist us with administering the provision of our services. For example:
- Business partners, suppliers and subcontractors for the performance of any contract we enter into with them or you.
- Agents we engage to perform functions on our behalf including fulfilling order deliveries, sending communications, analysing data, providing marketing assistance, processing payments and providing customer service or volunteer management. They have access to personal information needed to perform their functions, but may not use it for other purposes.
- Analytics and search engine providers that assist us in the improvement and optimisation of our website.
We may provide third parties (such as funders) with general information about our service users and donors, but this information is both aggregate and anonymous.
Your Information Rights
You have the right to be informed about how we process your personal data, the right to access your data, the right to have your personal data held by us rectified if it is inaccurate or incomplete.
You may have the right to ask us to erase your personal data, to ask us to restrict our processing or to object to our processing of your personal data. You can make these requests at any time by emailing us.
For more information about your rights under data protection legislation or if you are not satisfied with our response to any data protection issues you raise with us, you can visit the website of the UK’s Information Commissioner’s Office and make a complaint to them.
Myelopathy.org is the Data Controller for Myelopathy.org and the trustees have responsibility for data protection within the organisation. You can contact us by:
Post: C/O Lakin Rose, Pioneer House, Vision Park, Cambridge, CB24 9NL
Your Choices and Telling Us When Things Change
You can change your preferences on what you receive from us or how we contact you, at any time. You can do so by emailing us.
Updating Your Details
So that we can provide the best service possible to you, please advise us of any changes in your details. You can update us by emailing us.