Who we are

Our website address is: https://www.progressivemsalliance.org/  The website is maintained and managed by the MS International Federation. Read our terms and conditions for using this site.

Controller

MS International Federation is the controller and responsible for your personal data (collectively referred to as “MSIF”, “we”, “us” or “our” in this privacy notice).

We have appointed a data protection officer (DPO) who is responsible for overseeing questions in relation to this privacy notice. If you have any questions about this privacy notice, including any requests to exercise your legal rights, please contact the DPO using the details set out below.

Contact details

Our full details are:

Full name of legal entity: Multiple Sclerosis International Federation

Title  of DPO: IT Manager

Email address: [email protected]

Postal address: Skyline House, 3rd Floor, 200 Union Street, London, SE1 0LX, United Kingdom

Telephone number: +44 (0)20 7620 1911

You have the right to make a complaint at any time to the Information Commissioner’s Office (ICO), the UK supervisory authority for data protection issues (www.ico.org.uk). We would, however, appreciate the chance to deal with your concerns before you approach the ICO so please contact us in the first instance.

Changes to the privacy notice and your duty to inform us of changes

This version was last updated in January 2021.

It is important that the personal data we hold about you is accurate and current. Please keep us informed if your personal data changes during your relationship with us.

 

What personal data we collect and why we collect it

Comments

When visitors leave comments on the site we collect the data shown in the comments form, and also the visitor’s IP address and browser user agent string to help spam detection.

An anonymised string created from your email address (also called a hash) may be provided to the Gravatar service to see if you are using it. The Gravatar service Privacy Policy is available here: https://automattic.com/privacy/. After approval of your comment, your profile picture is visible to the public in the context of your comment.

Media

If you upload images to the website, you should avoid uploading images with embedded location data (EXIF GPS) included. Visitors to the website can download and extract any location data from images on the website.

Contact forms

Includes, billing address, delivery address, email address, telephone numbers and website URL.

Cookies

If you leave a comment on our site you may opt in to saving your name, email address and website in cookies. These are for your convenience so that you do not have to fill in your details again when you leave another comment. These cookies will last for one year.

If you visit our login page, we will set a temporary cookie to determine if your browser accepts cookies. This cookie contains no personal data and is discarded when you close your browser.

When you log in, we will also set up several cookies to save your login information and your screen display choices. Login cookies last for two days, and screen options cookies last for a year. If you select “Remember Me”, your login will persist for two weeks. If you log out of your account, the login cookies will be removed.

If you edit or publish an article, an additional cookie will be saved in your browser. This cookie includes no personal data and simply indicates the post ID of the article you just edited. It expires after 1 day.

Embedded content from other websites

Articles on this site may include embedded content (e.g. videos, images, articles, etc.). Embedded content from other websites behaves in the exact same way as if the visitor has visited the other website.

These websites may collect data about you, use cookies, embed additional third-party tracking, and monitor your interaction with that embedded content, including tracking your interaction with the embedded content if you have an account and are logged in to that website.

Our websites may include links to third-party websites, plug-ins and applications. Clicking on those links or enabling those connections may allow third parties to collect or share data about you. We do not control these third-party websites and are not responsible for their privacy statements. When you leave our website, we encourage you to read the privacy notice of every website you visit.

Analytics

includes information about how you use our services and deal with us.

 

Who we share your data with

We may have to share your personal data with the parties set out below for the purposes set out above.

  • Service providers acting as processors based within the EEA who provide the following services:
    • com EMEA Ltd – contact relationship management system (UK) (privacy)
    • Stripe UK – payment processing (UK) (privacy)
    • Paypal UK – payment processing (UK) (privacy)
    • RaiseNow AG – donation processing (Switzerland) (privacy)
    • GetResponse Sp. z o.o. – mass email provider (Poland) (privacy)
    • Justgiving – donation processing (UK) (privacy)
    • Worldpay Limited (UK) (privacy)
  • Service providers acting as processors based outside of the EEA who provide the following services:
    • WP Engine – website hosting (Australia, USA, UK) (privacy)
    • Zapier, Inc – system integration platform (USA) (privacy)
  • Professional advisers acting as processors or joint controllers including lawyers, bankers, auditors and insurers based in the United Kingdom who provide consultancy, banking, legal, insurance and accounting services.
  • HM Revenue & Customs, regulators and other authorities acting as processors or joint controllers based in the United Kingdom who require reporting of processing activities in certain circumstances.

We require all third parties to respect the security of your personal data and to treat it in accordance with the law. We do not allow our third-party service providers to use your personal data for their own purposes and only permit them to process your personal data for specified purposes and in accordance with our instructions.

 

How long we retain your data

We will only retain your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements.

If you leave a comment, the comment and its metadata are retained indefinitely. This is so we can recognise and approve any follow-up comments automatically instead of holding them in a moderation queue.

To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.

By law we, and our payment gateway are legally obligated to retain essential information about your donation (including Contact, Identity, Financial and Transaction Data) for seven years for tax purposes.  We do not retain payment card details.

Any private messages sent to us via social media (e.g. Facebook Messenger) will be deleted once the inquiry has been dealt with.

In some circumstances you can ask us to delete your data: see Request erasure below for further information.

In some circumstances we may anonymise your personal data and special category data (so that it can no longer be associated with you) for research or statistical purposes in which case we may use this information indefinitely without further notice to you.

 

What rights you have over your data

If you have an account on this site, or have left comments, you can request to receive an exported file of the personal data we hold about you, including any data you have provided to us. You can also request that we erase any personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes.

Under certain circumstances, you have rights under data protection laws in relation to your personal data.

You have the right to:

Request access to your personal data (commonly known as a “data subject access request”). This enables you to receive a copy of the personal data we hold about you and to check that we are lawfully processing it.

Request correction of the personal data that we hold about you. This enables you to have any incomplete or inaccurate data we hold about you corrected, though we may need to verify the accuracy of the new data you provide to us.

Request erasure of your personal data. This enables you to ask us to delete or remove personal data where there is no good reason for us continuing to process it. You also have the right to ask us to delete or remove your personal data where you have successfully exercised your right to object to processing (see below), where we may have processed your information unlawfully or where we are required to erase your personal data to comply with local law. Note, however, that we may not always be able to comply with your request of erasure for specific legal reasons which will be notified to you, if applicable, at the time of your request.

Object to processing of your personal data where we are relying on a legitimate interest (or those of a third party) and there is something about your particular situation which makes you want to object to processing on this ground as you feel it impacts on your fundamental rights and freedoms. You also have the right to object where we are processing your personal data for direct marketing purposes. In some cases, we may demonstrate that we have compelling legitimate grounds to process your information which override your rights and freedoms.

Request restriction of processing of your personal data. This enables you to ask us to suspend the processing of your personal data in the following scenarios: (a) if you want us to establish the data’s accuracy; (b) where our use of the data is unlawful but you do not want us to erase it; (c) where you need us to hold the data even if we no longer require it as you need it to establish, exercise or defend legal claims; or (d) you have objected to our use of your data but we need to verify whether we have overriding legitimate grounds to use it.

Request the transfer of your personal data to you or to a third party. We will provide to you, or a third party you have chosen, your personal data in a structured, commonly used, machine-readable format. Note that this right only applies to automated information which you initially provided consent for us to use or where we used the information to perform a contract with you.

Withdraw consent at any time where we are relying on consent to process your personal data. However, this will not affect the lawfulness of any processing carried out before you withdraw your consent. If you withdraw your consent, we may not be able to provide certain products or services to you. We will advise you if this is the case at the time you withdraw your consent.

If you wish to exercise any of the rights set out above, please contact us.

No fee usually required

You will not have to pay a fee to access your personal data (or to exercise any of the other rights). However, we may charge a reasonable fee if your request is clearly unfounded, repetitive or excessive. Alternatively, we may refuse to comply with your request in these circumstances.

What we may need from you

We may need to request specific information from you to help us confirm your identity and ensure your right to access your personal data (or to exercise any of your other rights). This is a security measure to ensure that personal data is not disclosed to any person who has no right to receive it. We may also contact you to ask you for further information in relation to your request to speed up our response.

Time limit to respond

We try to respond to all legitimate requests within one month. Occasionally it may take us longer than a month if your request is particularly complex or you have made a number of requests. In this case, we will notify you and keep you updated.

Where we send your data

We may share your personal data within the MS International Federation or The National Multiple Sclerosis Society. This may involve transferring your data outside the European Economic Area (EEA).

We ensure your personal data is protected by requiring all our group entities to follow the same rules when processing your personal data.

Whenever we transfer your personal data out of the EEA, we ensure a similar degree of protection is afforded to it by ensuring at least one of the following safeguards is implemented:

  • We will only transfer your personal data to countries that have been deemed to provide an adequate level of protection for personal data by the European Commission.
  • Where we use certain service providers, we may use specific contracts approved by the European Commission which give personal data the same protection it has in Europe.
  • Where we use providers based in the US, we may transfer data to them if they are part of the Privacy Shield which requires them to provide similar protection to personal data shared between Europe and the US.

Please contact us if you want further information on the specific mechanism used by us when transferring your personal data out of the EEA.

Additional information

How we protect your data

We have put in place appropriate security measures to prevent your personal data from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. In addition, we limit access to your personal data to those employees, agents, contractors and other third parties who have a business need to know. They will only process your personal data on our instructions and they are subject to a duty of confidentiality.

We have put in place procedures to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so.

What data breach procedures we have in place

We have put in place appropriate security measures to prevent your personal data from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. In addition, we limit access to your personal data to those employees, agents, contractors and other third parties who have a business need to know. They will only process your personal data on our instructions and they are subject to a duty of confidentiality.

We have put in place procedures to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so.

What third parties we receive data from

We may receive personal data about you from various third parties and public sources as set out below:

  • Technical Data from the following parties:
    • analytics and search information providers such as Facebook based outside the EU;
  • Identity and Contact Data from publicly availably sources such as Companies House and the Electoral Register based inside the EU.

What automated decision making and/or profiling we do with user data

We do not use your data for automated decision making or profiling.