Introduction

This Privacy Policy explains how we collect and use and store personal information about you as a Member of the Society or as a Visitor or Member using our website: pernicious-anaemia-society.org.

If you have any questions of concerns about data privacy you can get in touch with us in the following ways:

by email: dp*@pa*.uk
write to us at Data Protection Officer, The Pernicious Anaemia Society
Brackla House 2nd Floor, Brackla Street, Bridgend, CF31 1BZ, United Kingdom.

By using our website and agreeing to this Policy, you consent to our use of cookies in accordance with the terms of this policy.

Purpose of the Pernicious Anaemia Society

The Pernicious Anaemia Society is a UK Registered Charity No.1147839 and exists to raise awareness, provide support and information and campaign for better diagnosis and treatment for all those affected.

We rely on voluntary donations and fundraising activities to fund our work and therefore collect data to make fundraising appeals, raise awareness and support all of our work.

Part of the Society’s work is to assist with and promote medical and other research into Pernicious Anaemia and Vitamin B12 deficiency. We are ambassadors for our Members and we do important work in order to improve the lives of sufferers. We may contact you in order to seek your permission to share your personal data with our partners for the purposes of research.

Lawful Basis for Collecting and Storing Data

In accordance with the European General Data Protection Regulation (GDPR) the lawful basis by which we collect, and store personal data is
1. Consent – you have given us your information and permission to record it
2. Contract – you have purchased/ordered materials and/or information and we have collected your data in order to supply it
3. Legitimate interests – processing of your data is necessary for your legitimate interests in pernicious anaemia

How We Collect your Data

We collect your data both directly and indirectly

When you give it to us directly

You may give us your information in order to enquire about our work, complete a survey, post on a news feed, sign up for one of our events or newsletter, become a Member, volunteer, share your story, make a donation or call the Call Line.  This may be by phone, by email or by filling in a form on our website. We will use your data for the purposes of administrating your membership and we will contact you from time to time with news and updates within the field of Pernicious Anaemia

When you give it to us indirectly

Third parties:  Your information may be shared with us by independent event organisers such as the London Marathon, Charity Challenge and others, or by fundraising sites such as Virgin Money Giving, Just Giving, AmazonSmile.
We may receive information from companies such as PayPal, Payroll Giving and more, or from social media sites if you have given them permission to pass on your information.
These independent parties should only pass on your information if you have given them your express consent to do so. They will have their own privacy policies so you may wish to check this when you give your information to understand how they process your information.
You should consult their privacy policies when you provide your information, to understand fully how they process it.
Information Available Publicly: We may use details about you that have been found in places such as Companies House or on publicly available websites and information that has been published in articles/ newspapers.
Website analytics: We also gather information on how our websites are used, such as which pages are visited most, which publications downloaded most often, and which services are of most interest. In this respect, we use aggregated information which is anonymous and does not identify individual visitors to our websites.
We may also track which pages users visit when they click on links in our emails. We use this website information to personalise and improve the way our websites are presented, and the information provided to ensure we provide the best service for users.

What Information We Collect and How We Use It

We will only use your data in a manner that is appropriate considering the basis on which that data was collected, as set out in the ‘lawful basis’ section above.
For example, we may use your personal information to:

• reply to enquiries you send to us
• handle donations or other transactions that you initiate
• where you have specifically agreed to this, send you marketing communications by email relating to our work which we think may be of interest to you.

All of our forms have clear preferences for contacting you. If you don’t want to hear from us then please let us know when you provide your data or contact us via the options above.

Updates about our work

If you want to receive updates from us, we will collect:

• Your name
• E-mail address
• Phone number

We might also ask for your:

• Address (if you want to receive postal updates)
• More details about why you are interested in the Pernicious Anaemia Society e.g. if you’re a patient or healthcare professional

We will use your data to:

• Send promotional material about our activities, services, ways you can support the Society or other information which we think you may find interesting, using the contact details which you have provided.
• Keep a record of your relationship with us

All of our marketing/promotional information will have clear information on how to opt-out. If you no longer wish to hear from us then just let us know by following the options on the material you have received or email us at dp*@pa***.uk
The lawful basis for processing this data is ‘Legitimate Interests’

Purpose of the Pernicious Anaemia Society

The Pernicious Anaemia Society is a UK Registered Charity No.1147839 and exists to raise awareness, provide support and information and campaign for better diagnosis and treatment for all those affected.

We rely on voluntary donations and fundraising activities to fund our work and therefore collect data to make fundraising appeals, raise awareness and support all of our work.

Part of the Society’s work is to assist with and promote medical and other research into Pernicious Anaemia and Vitamin B12 deficiency. We are ambassadors for our Members and we do important work in order to improve the lives of sufferers. We may contact you in order to seek your permission to share your personal data with our partners for the purposes of research.

Fundraise or donations

If you raise money for us or donate to us, we will usually collect:

• Name and contact details
• Date and detail of your fundraising/donation(s)
• Payment details – we do not hold these details, they are processed on our behalf by our trusted payment processors

We might also ask for:

• The reason you decided to support us (optional)
• Details specifically required to participate in a fundraising challenge e.g. your name, date of birth, location, fundraising page
• Your clothing size (if you would like to receive/order branded clothing)
• Your Social Media account names if you would like us to Follow or otherwise support your fundraising activity

We will use your data to:

• Administer your donation, including processing gift aid
• Keep a record of your relationship with us
• Ensure we know how you prefer to be contacted
• Understand how we can improve our services, products, or information.

The lawful basis for processing this data is ‘Legitimate Interests’:
The processing is necessary for us to raise funds to be used to further all our charitable objectives

Telephone Helpline

We run a Helpline and support service to provide support to individuals affected by pernicious anaemia, and may collect personal data in order to provide those services. Our Helpline and support staff may collect:

• Name and contact details
• Sensitive personal data about your health when you speak, email or send an instant message to them
• Gender, ethnicity, region of the UK, symptoms or treatment people have experience with

We will use your data to:

• Provide you with the services, materials or information you have requested
• Ensure we know how you wish to be contacted
• Understand your needs
• Keep a record of your relationship with us
• Understand how we can improve our services products or information

We may also use your data to:
• To further our work for those with Pernicous Anaemia and to raise awareness.
This information may be made public by us at events, in materials promoting our campaigning and fundraising work, or in documents such as our annual report but will only be used if we have the explicit and informed consent of the individuals involved.

Sharing your story

If you have chosen to tell us about your experiences with Pernicious Anaemia to help further our work, share your story on our website, or take on a role as a Volunteer then this may include sharing sensitive information related to your health and family life, in addition to biographical and contact information.

We will only ever share this information publicly if we have your explicit consent to do so. We will usually share it via our website or social media or in a specific text approved by you. Sometimes we may use your information in materials promoting our campaigning and fundraising work, or in documents such as our annual report, but only with your consent.

From time to time we may be asked for details of your story, by third parties (such as newspapers, radio stations or TV producers). We will never pass your details to them without your explicit consent each and every time we are asked.
The lawful basis for processing this data is ‘Legitimate Interests’:
• The processing is necessary for us to raise awareness of Pernicous Anaemia and the issues that sufferers face
• The processing is necessary to our charitable objective to provide information and support

Website analytic data

We also gather information on how our websites are used, such as which pages are visited most, which publications downloaded most often and which services are of most interest. In this respect we use aggregated information which is anonymous and does not identify individual visitors to our websites.

We may also track which pages users visit when they click on links in Society emails. We use this website information to personalise and improve the way our websites are presented and the information provided to ensure we provide the best service for users.

Survey data

We may, from time to time, run Surveys either directly or through third parties, which can be completed on our website, which allow you to anonymously input information about your health and treatment.
The information you provide on this form will only be used for statistical purposes. Data will not be shared with any third party unless expressly indicated with an option to Opt In when completing the Survey.

Third parties

We do not sell or share personal details to third parties for the purposes of marketing.
We will not pass on your details to anyone else without your express permission except in exceptional circumstances where someone may be at risk of serious harm or if required to do so by Law.

Membership Data

We may use your personal information to:

• enable your use of the services available on our website and on the Membership section of our Website;
• send you goods purchased through our website;supply to you services purchased through our website;
• send statements, invoices and payment reminders to you, and collect payments from you;
• send you non-marketing communications;
• send you email notifications that you have specifically requested;
• send you our email newsletter, if you have requested it (you can inform us at any time if you no longer require the newsletter);
• deal with enquiries and complaints made by or about you relating to our website;
• verify compliance with the terms and conditions governing the use of our website.

Your membership details are private. We will never publish these details unless we have your express permission to do so. You can also amend the contact preferences in your account to stop us from contacting you in connection with the services available through the Website for which you register when you set up your account.

How Long do we Keep your Personal Information?

Personal information that we process for any purpose or purposes shall not be kept for longer than is necessary for that purpose or those purposes.
Notwithstanding the other provisions of this Section, we will retain documents (including electronic documents) containing personal data:
(a) to the extent that we are required to do so by law;
(b) if we believe that the documents may be relevant to any ongoing or prospective legal proceedings; and
(c) in order to establish, exercise or defend our legal rights (including providing information to others for the purposes of fraud prevention and reducing credit risk).

Data Sharing and Transfers

We will not, without your express consent, supply your personal information to any third party for the purpose of their or any other third party’s direct marketing.

All our website financial transactions are handled through our payment services providers, Stripe and PayPal. You can review the provider’s privacy policy at Stripe.com and Paypal.com. We will share information with our payment services provider only to the extent necessary for the purposes of processing payments you make via our website, refunding such payments and dealing with complaints and queries relating to such payments and refunds.

Your personal data is stored on our servers which are in the European Economic Area. If we share your personal data with any third party service provider in the course of providing you with our services, those third parties are required to process your data in accordance with contracts which comply with data protection legislation.

Disclosing personal information

We may disclose your personal information to any of our employees, volunteers, insurers, professional advisers, agents, suppliers or subcontractors and partners insofar as reasonably necessary in order to conduct the business of the Society and for the purposes set out in this policy.

We may disclose your personal information:

(a) to the extent that we are required to do so by law;
(b) in connection with any ongoing or prospective legal proceedings;
(c) in order to establish, exercise or defend our legal rights (including providing information to others for the purposes of fraud prevention and reducing credit risk);
(d) to any person who we reasonably believe may apply to a court or other competent authority for disclosure of that personal information where, in our reasonable opinion, such court or authority would be reasonably likely to order disclosure of that personal information.

Except as provided in this policy, we will not provide your personal information to any other third parties.

Access to your information and correction

We want to make sure that your information is accurate and up-to-date and will delete or amend any information that you think is inaccurate. You can edit your own details at any time by logging in to your membership account. You can also cancel your membership at any time from your account. Should you wish to delete your account please contact us via me********@pa***.uk. Amendments to your account can be made online by signing in to your account or by contacting us.

You have the right to close your account at any time and have us delete all of your personal information unless we are in the process of responding to any complaint that you make.

How do you remove your name and details from the database?

You can contact us to request for your account to be closed and the information we hold to be removed at any time, which will be confirmed by us.
You can also call us on the contact number published on our website.

How do you unsubscribe from future mailings?

You can stop receiving emails by updating your contact preferences or clicking the unsubscribe link at the bottom of every newsletter or bulletin we send you, from your membership-account or you can send us an email at ne********@pa***.uk

How can you obtain information held about you?

You have the right to request a copy of the information that we hold about you. If you would like a copy of some or all of your personal information please email us at dp*@pa*.uk
Registered Office
The Pernicious Anaemia Society
Brackla House
2nd Floor,
Brackla Street,
Bridgend,
CF31 1BZ,
United Kingdom

Security of personal information

We will take reasonable, physical, technical, and organisational precautions to prevent the loss, misuse or alteration of your personal information.
We will store all the personal information you provide on our secure (password- and firewall-protected) servers and if stored offline will ensure it is secure from improper access, use, alteration, destruction or loss.
All electronic financial transactions entered into through our website will be protected by encryption technology.
You acknowledge that the transmission of information over the internet is inherently insecure, and we cannot guarantee the security of data sent over the internet.

You are responsible for keeping the password you use for accessing our website confidential; we will not ask you for your password (except when you log in to our website). Your password is only known to you and you can change it at any time in your membership account. Online security risks can be minimised simply by ensuring that your password is always kept secure. We recommend you follow the password security advice below:
(a) Always use a password which is personal and does not contain your name, email address or the word ‘password’
(b) Ensure your password contains both letters and numbers
(c) Never give your password out to anyone – we will never ask you for your password
(d) Change your password at least once every three months
(e) Take a moment to memorise your password so you don’t need to write it down
(f) Try and use a different password for each different website you use

Our website may contain links to other sites. While we try to link only to sites that share our high standards and respect for privacy, we are not responsible for the content or the privacy practices employed by other sites. Please be aware that Websites that have links from our site may collect personally identifiable information about you. This privacy statement does not cover the information practices of those websites.

Updates of this Policy

We may update this policy from time to time by publishing a new version on our website.
You should check this page occasionally to ensure you are happy with any changes to this policy.
We may notify you of changes to this policy (by email or by other means).

Under the Data Protection Act 2018 you have the following rights:

• Information Right – the right to receive the information contained in this policy and our data collection forms about the way we process your personal data.
• Personal Data Access Right – the right to know that we are processing your personal data and, in most circumstances, to have a copy of the personal data of yours that we hold. You can also ask for certain other details such as what purpose we process your data for and how long we hold it.
• Personal Data Correction Right – You have the right to request that we correct inaccurate data or complete incomplete data that we hold on you.
• Personal Data Erasure Right – Known as the Right to be forgotten. In certain circumstances you may request that we erase your personal data held by us.
• Personal Data Restriction Right – You have the right to restrict the way we process your personal data in certain circumstances, for example if: you contest the accuracy of the data, if our processing is unlawful, to pursue legal claims, where we are relying on legitimate interests to process data.
• Data Processing Objection Right – You have the right to object to us processing your data for (i) direct marketing purposes (ii) scientific or historical research or statistical purposes and (iii) purposes of profiling related to direct marketing or based on our legitimate interests or on the performance of a task in the public interest.
• Data Portability Right – You have the right to receive a copy of certain personal data or to have it transferred to another organisation in some circumstances.

Right to Withdraw Consent at any time

Where we use your personal information based on your prior consent, such as information about your health, or where you have given us permission to send you marketing communications by email, mobile messaging and by direct message on social media, you can withdraw your consent at any time by contacting us.

Cookies

What Are Cookies
As is common practice with almost all professional websites this site uses cookies, which are tiny files that are downloaded to your computer, to improve your experience. This page describes what information they gather, how we use it and why we sometimes need to store these cookies. We will also share how you can prevent these cookies from being stored however this may downgrade or ‘break’ certain elements of the sites functionality.
For more general information on cookies see the Wikipedia article on HTTP Cookies.

How We Use Cookies
We use cookies for a variety of reasons detailed below. Unfortunately in most cases there are no industry standard options for disabling cookies without completely disabling the functionality and features they add to this site. It is recommended that you leave on all cookies if you are not sure whether you need them or not in case they are used to provide a service that you use.

Disabling Cookies
You can prevent the setting of cookies by adjusting the settings on your browser (see your browser Help for how to do this). Be aware that disabling cookies will affect the functionality of this and many other websites that you visit. Disabling cookies will usually result in also disabling certain functionality and features of the this site. Therefore it is recommended that you do not disable cookies.

The Cookies We Set
If you create an account with us then we will use cookies for the management of the signup process and general administration. These cookies will usually be deleted when you log out however in some cases they may remain afterwards to remember your site preferences when logged out.
We use cookies when you are logged in so that we can remember this fact. This prevents you from having to log in every single time you visit a new page. These cookies are typically removed or cleared when you log out to ensure that you can only access restricted features and areas when logged in.
This site offers newsletter or email subscription services and cookies may be used to remember if you are already registered and whether to show certain notifications which might only be valid to subscribed/unsubscribed users.
This site offers e-commerce or payment facilities and some cookies are essential to ensure that your order is remembered between pages so that we can process it properly.
When you submit data to through a form such as those found on contact pages or comment forms cookies may be set to remember your user details for future correspondence.

Third Party Cookies
In some special cases we also use cookies provided by trusted third parties. The following section details which third party cookies you might encounter through this site.
This site uses Google Analytics which is one of the most widespread and trusted analytics solution on the web for helping us to understand how you use the site and ways that we can improve your experience. These cookies may track things such as how long you spend on the site and the pages that you visit so we can continue to produce engaging content.
For more information on Google Analytics cookies, see the official Google Analytics page.
We also use social media buttons and/or plugins on this site that allow you to connect with your social network in various ways. For these to work the following social media sites including; Facebook, Twitter, Vimeo, Instagram, Pinterest, will set cookies through our site which may be used to enhance your profile on their site or contribute to the data they hold for various purposes outlined in their respective privacy policies.

More Information
Hopefully that has clarified things for you and as was previously mentioned if there is something that you aren’t sure whether you need or not it’s usually safer to leave cookies enabled in case it does interact with one of the features you use on our site. However if you are still looking for more information then you can contact us through our Contact Page.

More Information

Hopefully that has clarified things for you and as was previously mentioned if there is something that you aren’t sure whether you need or not it’s usually safer to leave cookies enabled in case it does interact with one of the features you use on our site. However if you are still looking for more information then you can contact us through our Contact Page.