Mast Cell Action would like our guests, friends and those we work with to feel safe and secure in knowing that their personal data will be protected.

To fulfil our promise, Mast Cell Action endeavours to provide utmost transparency in the way in which your data and personal information is collected, used, and stored.


Mast Cell Action provide support, raise awareness, and help advance the diagnosis and treatment of MCAS. Our objective is to build an organisation that gives a voice to patients, supports doctors, and informs policy-makers about this condition

Here at Mast Cell Action, we respect your privacy and pledge to protect your personal information in compliance with the General Data Protection Regulation (GDPR).

You are welcome to access and use our site without disclosing your personal data


We want to ensure you receive communications most relevant to you, whether you are visiting our website, communicating with us by phone or by post, Mast Cell Action want to provide you with the best quality of care, tailored to you as an individual. To help fulfil our promise, we may collect information from you in some of the following ways:

  • WHEN YOU INTERACT WITH US DIRECTLY: If you contact us direct through our website or via email, we will keep a digital record of your communications with Mast Cell Action
  • DURING THE HIRING PROCESS: At recruitment stage, data will be collected through the application process, directly from a member, an employment agency, or by a background check provider. Mast Cell Action may sometimes collect additional information from third parties, including former employers
  • BECOME A FRIEND: If you have signed up to “Become a Friend” we will keep a record of the details you share with us during the signup process. As part of our signup agreement, the service provides you with news and updates via your contact email. If you no longer wish to receive email communications please inform us at
  • SHARED STORIES: If you have shared your story or photos with us, we will store and use your information coinciding with your provided consent
  • THROUGH DONATIONS: If you have donated to Mast Cell Action, or undertaken a fundraiser on our behalf, your information will be stored and used as per your provided consent
  • OTHER PURPOSES: Whilst working or volunteering with us, Mast Cell Action may at times need to collect additional personal information to that already mentioned. Before doing so, written notice will be provided setting out details of the purpose and the lawful basis of why the data is being collected, its use, storage, and member rights


Personal information we collect may include details such as your name, gender, date of birth, contact details and financial information. We will typically use the following information:

  • Name, date of birth, gender, address, telephone and email contact
  • National Insurance number, bank account details, payroll records and tax status information
  • Salary, annual leave, pension and benefits information
  • Start date, location of employment/volunteering or workplace
  • Recruitment information, including copies of right to work documentation, copy of driving license, references and any other information included in a CV, cover letter, or as part of the application process
  • Information voluntarily submitted relative to race or ethnicity, religious beliefs, sexual orientation, and political opinions
  • Information relative to health, including any medical condition, health, and sickness records
  • Information about criminal convictions and offences
  • Quotes about our services, resources and your experience of Mast Cell Action or living with MCAS
  • Photographs


Whilst carrying out work/volunteering activities, members and individuals are likely to process personal data. Mast Cell Action will only expect individuals to process personal data where the organisation has a lawful basis to process such information. Examples include:

  • Where we need to perform the contract we have entered into with the data subject, either for employment or commercial purposes
  • Where we need to comply with a legal obligation
  • When consent has been obtained from the data subject to process their personal data for specified purposes
  • Where it is necessary for our legitimate interests (or those of a third party) and where the interests and fundamental rights of the data subject do not override those interests
  • Where we need to protect the data subject’s interests, or for the interest of the public
  • Before beginning to collect or process personal data directly from a data subject, Mast Cell Action will ensure to issue an appropriate privacy notice to the data subject
  • Mast Cell action will not collect, store, or use unnecessary personal data and will ensure any personal data is deleted, erased, or removed as per the organisation’s strict retention policy
  • Mast Cell Action will only use data collected indirectly if they have evidence that it has been collected in accordance with the UK GDPR principles


How we use your personal information will depend on how you interact with us. The details below set out how you may interact with Mast Cell Action, and with open transparency, confirms how we are using and storing your personal data.

  • Mast Cell Action will only use personal information you send us for the purposes of which you provide, where there is a need to perform the contract/volunteering agreement in which members have entered, where there is a legal obligation, or where there is a legitimate interest
  • Any questions or general email communications the charity receives are stored within the company email account filing system
  • Specific requests for support made direct via the website contact function are deleted from the website database, copied and securely stored in a password-protected document within our e-mail system
  • Mast Cell Action keeps a record of responses to questions via the website for monitoring and training purposes, these responses will be stored indefinitely
  • Any data which Mast Cell Action does not need to hold for a particular period of time will be destroyed in accordance with our strict retention of data policy
  • There are other rare occasions where Mast Cell Action may use personal data, where there is a need to protect member interests, the interests of the general public, or for official purposes


During employment/volunteering and also for a short period after a working relationship has ended, Mast Cell Action will use personal information for certain purposes. The list below describes the purpose of our processing and the personal data involved:

  • For determining the terms of which members work/volunteer for Mast Cell Action
  • Checking employees right to work in the UK
  • When making payments to employees and to process any necessary tax and NI deductions
  • Liaising with employee pension providers and making payments
  • Administration relative to the performance of any contract of employment or volunteering agreement
  • Business management and work force planning, including accounting and auditing
  • Conducting and managing reviews of performance and determining performance requirements
  • Gathering evidence in respect of a complaint or grievance
  • Making decisions relative to employment or engagement
  • Education, training, and development requirements
  • Complying with health and safety obligations relative to RIDDOR reporting
  • Gathering data analytics to assess retention and attrition rates
  • Equal opportunities monitoring


We hold your information for reference purposes only, this information is not shared with any other individual, entity or organisation without your granted permission

If ever the case arose, the transferring of any data should only ever take place once appropriate safeguarding measures have been put in place, to protect the security of said data

Stories shared with Mast Cell Action will be approved by the individual prior to being distributed. Stories will be shared on multiple platforms including but not limited to Mast Cell Action's website, social media platforms, through newsletters, with doctors and at conferences.


Cookies are widely used to make websites function more efficiently for visitors, and to provide information to the owners of the site

Cookies come in the form of text files and can be stored on your computer, phone or other device, by websites you visit

Cookies do not collect or store personal information about you, rather, they collect information relative to the devices you use to access the internet and your browsing history

We may use cookies on our website to personalise content and advertising, and to provide analytics of site traffic

When you first visit our website, we may ask for consent to set cookies, it is at this stage you will have the opportunity to set your preferences

You can also withdraw your consent by clearing cookies from the cache in your computer and rejecting them next time you visit our website


Here at Mast Cell Action, we take looking after your information very seriously, implementing appropriate technical and organisational measures to protect the personal information we have in our care

Our policies protect against unlawful processing of personal data, accidental loss or destruction of data

Mast Cell Action will only hold your information for as long as reasonably necessary

Any information held will be stored in our secure data management system, which can only be accessed by authorised charity personnel

Mast Cell Action’s policy promotes regular and consistent review of all personal information held, ensuring held data and lawful reasoning is always up to date


You have the right to access, amend or delete your personal information held by us at any time. Please email and we will delete or amend any of your records as appropriate


Mast Cell Action will only use your personal information where we have your consent. However, there may be other lawful requirements for us to process your personal information. If and when doing so, Mast Cell Action is required by law to ensure that any processed data is:

  • Used lawfully, fairly and transparently
  • Collected only for valid purposes that have clearly been explained, and not used in any way that is incompatible with said purposes
  • Relevant to the purposes Mast Cell Action have informed members of, and limited only to those purposes
  • Accurate and kept up to date
  • Kept in a form which permits members to be identified for only as long as necessary for the relevant purpose
  • Kept securely


Mast Cell Action strives to ensure that the information provided on our website is accurate at the time of publication, timely, unbiased and useful. We will endeavour to respond to questions in a balanced and informative manner

The information contained on the site and communicated in responses should not be considered medical guidance or professional advice

Your use of this site constitutes acceptance of these terms and conditions

Using any of Mast Cell Actions’ content, logos, graphics or photographs without the charity's prior written consent is strictly prohibited

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Sign up to become a Friend of Mast Cell Action so we can keep you up to date on our progress and on how to get involved in our latest campaigns and initiatives. 

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Mast Cell Action relies entirely on the generosity of people like you. Please make a donation now and together we can make a difference to those affected by MCAS.

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