About EOS Network and your personal data

EOS Network (hereafter “we” or “us”) is the UK’s registered charity (Registered Charity Number 1198883) for Eosinophilic-Associated Diseases. We are committed to protecting your personal data (this is information that could identify you).

This policy explains how we collect and use your personal data and whom to contact if you have any questions. We have provided a number of examples of how this policy applies, but please note that this is not a complete list.

Please contact us if you have any questions: [email protected].

How we use your personal data and why

We only process personal information that you give us (see below). We also only process the information that we need to. For example, to provide you with the services, products, or information you have requested and to support our charitable aims. We give more detail of these aims below.

We may also process your personal data where such processing is necessary for compliance with a legal obligation to which we are subject, or in order to protect your vital interests or those of another person.

Sensitive Data

We sometimes process data that is legally referred to as sensitive data, for example, your gender or whether you or someone you are related to or care for has a diagnosis of Eosinophilic-Associated Diseases.

We only ask for this information with our legitimate interest in supporting individuals with or affected by Eosinophilic-Associated diseases. Sensitive personal data is only processed with your consent. You will find more examples below.

How we process the personal information of healthcare professionals 

Personal information we collect about healthcare professionals: 

  • Your name and contact details.
  • Your profession and specialism(s).
  • Your location.
  • Estimated number of patients in this disease area.
  • Profession and specialism(s).
  • Information on transactions and donations made by you to us and information as to whether you are a taxpayer.
  • Records of your communications with us.
  • Website usage data (IP address, browser type, length of visit etc.).

On what legal basis we collect your information:

  1. We process personal data with your consent.
  2. We process personal data as part of our legitimate responsibility to maintain accurate records.
  3. We process personal data based on our legitimate interest in administering donations, processing Gift Aid, and conducting fundraising activities.
  4. We may process certain personal data related to donations made through our website or platforms like JustGiving.
  5. Personal data may be processed in connection with fundraising efforts or when we believe you may be interested in supporting our cause.
  6. We maintain records of communications as part of our legitimate interest.
  7. We process personal data as part of our legitimate interest in operating our website.
  8. Consent is obtained for the collection of information by non-essential cookies.

 Why we collect this information:

  1. To stay in touch with you and to invite you to engage with our work. 
  2. To provide you with requested information, including newsletters.
  3. To further our charitable objectives.
  4. To check the information, we hold on you is up to date. 
  5. To manage and audit our financial accounts.
  6. To generate reports on our work, services, and events.
  7. To oversee and communicate about events, whether in-person or online, for which you've registered and for which we are responsible for processing participant data.
  8. To analyse the use and performance of our website e.g., visitor statistics, campaign impact, and global reach.
  9. To measure the usage of the resources and tools we have developed. 
  10.  To target advertising effectively.
  11. To display on our Find a Doctor Map and/or our Professionals Global Directory Map
  12. To facilitate connections between healthcare professionals or potential patients.
  13. To maintain records of your comments, questions, or complaints. 

How we process the information for non-healthcare professionals (such as patients and family members)

Personal information we collect:  

  • Name and contact details.
  • Health, lifestyle, and demographic information.
  • Where you do not have an eosinophilic gastrointestinal disease, your relationship if any with someone who does (e.g., parental, carer). 
  • Information on transactions and donations made by you to us and information as to whether you are a taxpayer.
  • Records of your communications with us.
  • Website usage data (including your IP address, browser type, length of visit etc.).
  • Employment and work experience history and any other information in your CV.
  • Sensitive personal data, including health, racial, ethnic and/or disability information.
  • Any unspent criminal convictions or pending court cases.

On what legal basis we collect your information:

  1. We process personal data with your consent.
  2. We maintain records as part of our legitimate interest.
  3. We process personal data as part of our legitimate interest in administering events.
  4. Our legitimate interest lies in supporting individuals affected by Eosinophilic-Associated diseases.
  5. Sensitive personal data (such as health or ethnic origin information and data relating to criminal convictions or offences) is processed only with your consent.
  6. Our legitimate interest involves contributing to the knowledge base supporting and advocating for individuals with Eosinophilic-Associated diseases.
  7. We collect your information based on legitimate interests in administering donations and processing Gift Aid, fundraising, and operating the website.
  8. We seek your consent when collecting information through non-essential cookies.
  9. We collect your data based on our legitimate interests in keeping records of communications identifying suitable candidates for volunteering or job vacancies. 

Why we collect your information:

  1. To stay in touch with you and to invite you to engage with our work. 
  2. To provide you with information you have asked for, including our newsletters, or to put you in touch with someone else who may be able to help you.  
  3. To further our charitable objectives.
  4. To ensure the accuracy of the information we hold about you.
  5. To administer and audit our accounts.  
  6. To generate reports on our work, services and events.
  7. To manage and communicate with you about an event (in-person or online) for which you have registered and for which we are responsible for processing participant data.
  8. To help us understand your situation and needs and provide you with relevant services and information accordingly.
  9. To deepen our understanding of the disease and its symptoms, needs and treatments.
  10. To produce reports and resources for professionals and patients. These will only include aggregated (de-identified) data.
  11. We may process personal data regarding fundraising or when we believe you may be interested in donating to our cause.
  12. To analyse the usage and performance of our website, such as tracking visitor numbers, assessing campaign impact, and determining our global reach.
  13. To measure the usage of the resources and tools we have developed.
  14. To optimise targeted advertising efforts.
  15. To maintain records of your comments, opinions, questions, or complaints.
  16. To process applications and assess your suitability if you apply to volunteer or work for us. 

How we collect your personal data 

We collect personal data:

  • Directly from you: when you register with us, submit information through our website, sign up to our events or contact us directly in any other way.
  • Automatically from our website: when you use our website, we collect your personal data using automated methods such as cookies. We will receive data about how you use our website, including the length of your stay, page visits, your IP address, and information about the device you are using to access the website.
  • From trusted partners: we may receive your personal data through organisations who we work with where they have your consent to share your data, including:
    1. independent event organisers and fundraising sites like JustGiving;
    2. external volunteering websites if you sign up to volunteer for us through them; and
    3. subcontractors acting on our behalf who provide us with technical, payment or delivery services.
  • From publicly available information we can collect information about you from social media platforms or websites like Companies House. 

How we share your personal data

 We share your personal data with the following categories of third parties: 

  • Payment processors in order to process your donations. When you make a donation to us, enter into the EOS Network Lottery, or purchase one of our clothing items, we use third party payment services to process the transaction. We do not collect any payment information (such as payment card details) ourselves and such information submitted by you when making a donation is not made available to us. Our payment service providers handle the information in accordance with their own privacy policies. The payment service providers we use are Stripe and GoCardless.
  • Supporters, patients and healthcare professionals. Part of our mission is to connect people so they can find appropriate support or share information.  We may share your personal details with someone else in our network in order to do this, but we’ll always ask you first.
  • Marketing and event administration when you attend one of our events in-person or online. The service providers we use are e.g. Beacon CRM, Zoom, Miscrosoft Teams/Outlook, Eventbrite, Mailchimp, Hubspot.
  • Survey providers where we use surveys to communicate with you or collect information or feedback from you. These include providers such as Mailchimp, Typeform, SurveyMonkey
  • Social media platforms, such as Facebook and Instagram. This partnership involves the creation of 'lookalike' audiences, where we match the interests, behaviours, and demographics of EOS Network's supporters with others who could benefit from our information, support, and engagement with our charity. Additionally, we may use audience preference services offered by such platforms to target supporters who have previously responded to EOS Network's fundraising and marketing efforts. Using platforms in this way is an important way in which we can reach more people who are likely to be interested in our work. You can change your settings via the social media platforms.
  • Other service providers, such as for IT hosting and maintenance purposes. These service providers are contractually required to keep your personal data secure and to use it only as is necessary to provide the services to us. In particular, we use Beacon CRM and Microsoft - Outlook to manage our processes and email, Google ads and analytics to understand our reach, Access for website hosting and Agile for IT support.

Where we transfer and how we store your personal data

Some of our service providers run their operations outside of the UK, including in countries with different data protection laws to the UK. In these circumstances we put in place appropriate safeguards to ensure that your information and rights in respect of your information are protected adequately in accordance with UK data protection law.

Your personal data is securely stored. We keep your personal data only for as long as is required to carry out the purposes for which it was collected, taking into account any applicable legal, accounting, reporting or regulatory requirements which specify how long certain records must  be kept.

How we keep your information and preferences up to date

You can contact us at [email protected] to withdraw consent to the processing of your personal data for specific purposes, and request that certain personal data we hold about you are  updated or deleted, at any time.

Cookies 

Our website runs on Content Management Systems (CMS), which uses cookies to function.

Cookies are small parcels of information routinely used by websites, such as an option you have selected or a page you have visited. Most cookies expire as soon as your session expires unless a user has self-selected options and bookmarked pages within our website. Cookies do not collect any personal identifying information.

Cookies help us understand how the website is used and to target our advertising effectively. We have given more details about these cookies below.

We use essential website cookies, including session and persistent cookies, to ensure our website's basic functionality and enhance user experience. These cookies may store preferences and login information and facilitate secure access. We also employ analytical cookies to gather data on site usage for improvement purposes. Please note that these cookies are necessary for our website to run smoothly, and your consent is not required for their use.

We also utilise non-essential cookies, such as third-party and advertising cookies, to enhance your experience further. These cookies may track your online behaviour and preferences to provide personalised content and targeted advertisements. Your consent is required to use these cookies, and you can accept or reject the non-essential cookies via the banner that appears when you first access our website or by clicking the “Manage Cookie Preferences” button at the bottom of the webpage.

You may also delete and block all cookies from any website within your web browser settings if necessary (note that doing so will impact the functionality of our website).

Most modern browsers allow you to manage cookies saved on your computer. Read more about cookies here.

Your rights

You have various rights in relation to your personal data. In particular, you have the right to:

  • request copies of your personal data that we hold;
  • request any inaccuracies or omissions in your personal data be corrected;
  • and, in certain circumstances, object to the processing of your personal data, or ask us to limit the processing of your personal data, or request your personal data is erased.

Additionally, where we process your personal data based on your consent, you have the right to withdraw this consent at any time.

To make a request, please contact us at [email protected] or EOS Network, PO BOX 12844, Colchester, Essex, England, CO7 5AQ,  

Complaints 

If you have any concerns about our handling of your personal data, please get in touch with us at [email protected] or EOS Network, PO BOX 12844, Colchester, Essex, England, CO7 5AQ.

You can also make a complaint to the UK data protection regulator, the Information Commissioner’s Office (ICO) at:

Information Commissioner’s Office

Wycliffe House

Water Lane

Wilmslow

Cheshire

SK9 5AF

ICO helpline number: 0303 123 1113

ICO website: https://www.ico.org.uk

Contact us 

By our website: https://www.eosnetwork.org/forms/contact-us

By post: EOS Network, PO BOX 12844, Colchester, Essex, England, CO7 5AQ.

By email: [email protected]

By telephone: +44 (0)333 772 1309

 

 

Last updated: 30.10.23