This page sets out the details of the ’1000 Faces of RMS’ privacy notice in relation to information collected about you.

About GDPR
The General Data Protection Regulation (GDPR) (EU) 2016/679 is a regulation in EU law on data protection and privacy for all individuals within the European Union.  When the GDPR takes effect, it will replace the 1995 Data Protection Directive (Directive 95/46/EC). It was adopted on 27 April 2016 and comes into force at the end of May 2018.

This privacy notice is intended to align with GDPR and will be continuously monitored to ensure it remains so.

About personal data
According to the European Commission, "personal data is any information relating to an individual, whether it relates to his or her private, professional or public life. It can be anything from a name, a home address, a photo, an email address, bank details, posts on social networking websites, medical information, or a computer’s IP address."

Where we collect information about you from
We collect information in the following ways:

1. When you give it to us DIRECTLY
You may give us your information in order to share your story, to sign up for one of our core activities or public events, tell us your story or to communicate with us.

2. When you give it to us INDIRECTLY
Your information may be shared with us by independent event organisers, for example a fundraising site like Just Giving.  These independent third parties will only do so when you have indicated that you wish to support our fundraising group ‘Help Jack Make a Difference’  and with your consent. You should check their Privacy Policy when you provide your information to understand fully how they will process your data.

3. When you give permission to OTHER ORGANISATIONS to share or it is available publicly.

Use of personal data
‘1000 Faces Of RMS’ (“we”) promise to respect any personal data you share with us, or that we get from other organisations and keep it safe.  The data we hold varies according to the way we engage with each person. We aim to be clear when we collect your data and not do anything you wouldn’t reasonably expect. We will not store information we do not need or keep it for longer than we need to.

Developing a better understanding of our supporters and those we support through their personal data allows us to make better decisions, fundraise more efficiently and, ultimately, improve our services. The purpose of 1000 Faces of RMS is to provide information and support to the Rhabdomyosarcoma family and patient communities and also promote collaboration with and amongst the research and clinical communities.

We also post photographs on social media platforms to promote our activities. Depending upon the nature of the photograph, we may need to seek your permission before uploading it (i.e an individual or small group photograph) There are certain circumstances where such permission is not needed (i.e. a large public gathering)

With respect to our public programme and events,  we will only send communications to those of you who have explicitly stated that you are happy for us to do so via your preferred channel(s) (email, SMS, phone or post).

We will not assume that you wish to receive this information unless you have opted in, even if you have received it prior to May 2018.

If you would like to receive such communications but have not opted in please email us at

In the case of certain individuals, such as business suppliers, we will store only information necessary to run ‘1000 Faces of RMS’ service for reasons deemed in our legitimate interests.

With respect to vulnerable people accessing one of our programmes, we will ask your permission to store your personal details. In the case of younger participants below the age of 13. we will need to seek this permission from their parents.

In the case of volunteers, we have decided to seek your permission even though it would fall into the category of legitimate interests.

In all cases we will consider the individual's interests, rights and freedom when we determine the legal basis for holding information.

What information do we collect about you?
The information we hold depends upon the reason for holding it. We will not keep any information we do not need to keep, and we will not store it longer than we need to.

If you are a participant, we collect the personal data that you either consent to give us, or have given permission for another organisation to share as part of an application to join one of our programmes, and reviews of your progress as a participant. 

Personal information we collect may include:

  • your name, title, gender and date of birth;
  • postal address, email address and phone number;
  • medical information,
  • current interests and activities.
  • photographs of you or the RMS patient that you represent   

This list is not exhaustive and if you have any concerns about what information ‘1000 Faces of RMS’  may have about you, you can make a subject access request and if you then wish, you can choose to have it removed. See the paragraphs entitled Opting out and The right to erasure below.

When we ask you to provide your personal information we will let you know why we are asking, and how we will use your data, by directing you towards this notice.

What we do with your information
If we ask for consent to hold your information we will only use your information for the purpose(s) you gave us permission to use it. Depending on your relationship with ‘1000 Faces of RMS’ and the preferences you have indicated, information we hold may be used by us for one or more of the following purposes: 

Contacting you if you are a participant involved in one of our core programmes

Sharing questionnaire information with researchers. Only if you explicity permit it will we share your questionnaire information with professional members, as standard practice we anonymise such information.

Hosting your photographs on our web site if you have chosen to upload them.

Sharing your story - Some people choose to tell us about their experiences with RMS in order to help other patients, families and researchers.  If we have the explicit and informed consent of the individuals, or their parent or guardian if they are under 18, this information may be shared with the RMS professional members or in materials promoting our campaigning and fundraising work. 

Sending you campaigning, canvassing or awareness information by post or electronic means. These types of communications can include:

  • News and updates about ‘1000 Faces of RMS’, such as current research issues or supporter e-newsletters.
  • Other relevant communications based upon your relationship with ‘1000 Faces of RMS’.

Opting out
You can opt out of any / all of our communications at any point simply by contacting us at

Please note that there may be some communications that we are required to send regardless of your contact preferences. These are essential communications, deemed necessary to fulfil our contractual obligations to you.  These include thank you letters.

Who we might share your information with
We undertake regular reviews of who has access to information that we hold to ensure that your information is only accessible by appropriately trained volunteers.

We will only ever share your data with others if we have your explicit and informed consent, except in the exceptional circumstances outlined in the next paragraph:

Exceptional circumstances where your information might need to be shared

In exceptional circumstances we may need to disclose your details if requested by the police, regulatory bodies or legal advisers.

In these highly exceptional circumstances we will seek your permission first but please note we may be obliged to share your information even if you do not provide permission.


We do not otherwise disclose personal data to any third parties or external organisations, other than data processors carrying out their normal work on our behalf such as Mailchimp, and only then if you have opted to receive information about our public events. We also upload photographs of our events to Facebook.

Any such companies are acting as approved data processors for ‘1000 Faces of RMS’, and we will ensure that they have secure systems in place to protect your information.

Because such external organisations are often based in other countries, by using them we will be transferring your personal information overseas, for instance to our bulk email distributor, MailChimp.

We are required to ensure any international transfers of data will be done securely, in accordance with best practice, and in compliance with the General Data Protection Regulation. (GDPR). Facebook, Twitter, Mailchimp and others now have GDPR compliant data protection policies and procedures, and we encourage you to check these out for yourself.

Your data will never be sold or passed to any third party for any other purpose than the ones mentioned above.

Keeping your information up to date

We really appreciate it if you let us know if your contact details change! You can do this in person, by telephone or email. Please see the bottom of this notice for our contact details.

How we keep your information secure
We have implemented security procedures, rules and technical measures to protect the personal data that we have under our control from:
unauthorised access;
improper use or disclosure;
unauthorised modification.

All our employees and data processors, who have access to, and are associated with the processing of personal data, are legally obliged to respect the confidentiality of our participants', visitors’ and supporters’ personal data.

How can I access the information about me, and correction of information?
You can ask us if we are keeping any personal data about you and you can also request to receive a copy of that personal data – this is called a Subject Access Request.
To make a Subject Access Request you will need to provide adequate proof of identity such as a copy of your passport, birth certificate or driving licence before your request can be processed. There is no fee charged for making a request.

Please try to be as clear as possible about the information you are seeking.

Once we have received your Subject Access Request and proof of identity, you will receive a response from us within 30 days and you will be able to get copies of any information we hold on you. Exemptions to disclosure may apply in some circumstances.

  • Subject Access Requests should be sent to:
    1000 Faces of RMS, 5 Melloncroft Drive West, Caldy, Merseyside, CH48 2JD, United Kingdom
  • Email:

The right to erasure
At any time you may request that we erase or correct ('rectify') your personal information. If you wish to correct any information on you held by 1000 Faces of RMS, simply contact or write to the above address.

Other websites
We will not share your information with other web sites or organisations without your express permission.

Changes to our privacy notice
We regularly review our privacy notice, and may make changes from time to time. Any changes made will be posted to this page, and will apply from the time we post them.

How to contact us
If you have any comments on our privacy notice, or information we hold about you please contact us:
by email to
or write to us at
1000 Faces of RMS, 5 Melloncroft Drive West, Caldy, Merseyside, CH48 2JD, United Kingdom

Rhabdomyosarcoma (RMS)

RMS is a rare and aggressive form of soft tissue cancer.  RMS has particularly high incidence amongst infant and adolescent cancer patients.  There is evidence to suggest that sarcomas have a disproportionately high genetic basis, unlike cancers that are clearly very largely due to environmental factors, like lung cancer and skin cancers.


‘1000 faces of RMS’ is a patient and research resource only and we offer no medical expertise or advice. Nor are we qualified to carry out any validation of the web sites that we link to.

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