Privacy Policy Pernicious Anaemia Society

Updated May 2018


The Pernicious Anaemia Society is a UK Registered Charity No.1147839. This privacy policy explains how we use the personal information we collect about you when you use our website

We are committed to safeguarding the privacy of our members and website visitors; in this policy we explain how we will treat your personal information.

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

What do we do with your personal data?

When visiting our website you should know that we use cookies and more can be read under the section about cookies and what they do below. If you comment on a news post, the information will be published and the comment is available for search be search engines. We also hold your email address.

We also offer a sign up service for everyone to get latest news post via email and so we will hold your contact details for this purpose

By registering as a Member with our Society, it is understood that members actively seeking to be part of the Pernicious Anaemia Society and its activities.

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 p
Pernicious Anaemia. We may collect, store and use the following kinds of personal information:

(a) information about your computer and about your visits to and use of this website including your IP address, geographical location, browser type and version, operating system, referral source, length of visit, page views and website navigation paths;
(b) information that you provide to us when registering with our website including your email address;
(c) information that you provide when completing your profile on our website including your name, profile pictures, gender, date of birth, relationship status, interests and hobbies, educational details and employment details;
(d) information that you provide to us for the purpose of subscribing to our email notifications and/or newsletters including your name and email address;
(e) information that you provide to us when using the services on our website, or that is generated in the course of the use of those services including the timing, frequency and pattern of service use;
(f) information relating to any purchases you make of our goods OR services OR goods and/or services or any other transactions that you enter into through our website including your name, address, telephone number, email address and card details;
(g) information that you post to our website for publication on the internet including your user name, your profile pictures and the content of your posts;
(h) information contained in or relating to any communication that you send to us or send through our website including the communication content and metadata associated with the communication; and
(i) any other personal information that you choose to send to us.

Please note that before you disclose to us the personal information of another person, you must obtain that person’s consent to both the disclosure and the processing of that personal information in accordance with this policy.

How Do We Use Personal Information

Personal information submitted to us through our website will be used for the purposes specified in this policy or on the relevant pages of the website.

We may use your personal information to:

(a) administer our website and the business of our Society
(b) personalise our website for you;
(c) enable your use of the services available on our website;
(d) send you goods purchased through our website;
(e) supply to you services purchased through our website;
(f) send statements, invoices and payment reminders to you, and collect payments from you;
(g) send you non-marketing communications;
(h) send you email notifications that you have specifically requested;
(i) send you our email newsletter, if you have requested it (you can inform us at any time if you no longer require the newsletter);
(j) deal with enquiries and complaints made by or about you relating to our website;
(k) keep our website secure and prevent fraud; and
(l) verify compliance with the terms and conditions governing the use of our website (including monitoring our private forum).

If you submit personal information for publication on our website, we will publish and otherwise use that information in accordance with the license you grant to us.

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.

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 recruitment services or courses available through the Website for which you register when you set up your account.

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 and 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 the online form. 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.

Retaining personal information

This Section sets out our data retention policies and procedure, which are designed to help ensure that we comply with our legal obligations in relation to the retention and deletion of 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).

Security of personal information

We will take reasonable 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.

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


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).

How to contact us

This website is owned and operated by The Pernicious Anaemia Society.

We are registered with the Charity Commission in England and Wales under registration number 1147839

Please contact us if you have any questions about our privacy policy or information we hold about you:

by email:

or write to us at Data Protection Officer, The Pernicious Anaemia Society
Brackla House 2nd Floor, Brackla Street, Bridgend, CF31 1BZ, United Kingdom.

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 or you can send us an email at

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

Registered Office

The Pernicious Anaemia Society
Brackla House
2nd Floor,
Brackla Street,
CF31 1BZ,
United Kingdom

Third party websites

Our website includes hyperlinks to, and details of, third party websites. While every effort to ensure that our partners have complied with relevant Data Laws and Regulations, we recommend that you check and review their policies to ensure that you agree with these.


What are cookies?

A cookie is a piece of information in the form of a very small text file that is placed on an internet user’s computer. It is generated by a web page server (which is basically the computer that operates the web site) and can be used by that server whenever the user visits the site. A cookie can be thought of as an internet user’s identification card, which tells a web site when the user has returned.

Cookies can’t harm your computer and we don’t store any personally identifiable information about you on any of our cookies.

Why do we use cookies?

We use two types of cookies: cookies set by our website and cookies set by third parties (i.e. other websites or services).

Our cookies enable us to keep you signed in to your account throughout your visit and to tailor the information displayed on the site to your preferences.

We also use third party cookies to help deliver relevant information and to integrate content with social networks, such as Facebook and Google+, and to better understand how the features and functions of the site are used in order that we can improve our service.

If you would like more information about the cookies we use, as well as details on how to opt-out, please see below. Our website uses cookies.”>Our Cookies Policy can be viewed here.

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.

General Policies

As we grow in size policies are becoming vital to ensure legal compliance, but also to provide a quality service to our members.

We have policies on Child Protection, Vulnerable Adults, Sustainability, Data Protection and Welsh Language

Protection of the Child

Our protection of the child policy exists so that our trustees, staff and volunteers all know how to deal with any problems arising in our dealings with children.
Child Protection Policy.

Whilst Pernicious Anaemia is mainly found in older people, it can also affect young people (Juvenile Pernicious Anaemia). Even though membership of the society is limited to those over the age of eighteen, young people have, in the past, and will, in the future, visit the society’s internet site and forum in able to access information, advice and support from fellow members and the Information Library.

There is no guarantee that young people will not access the online forum and website to glean information about their own condition or on behalf of a family member who has the condition. All children and young people, whatever their age, gender and racial background, should be protected from harm and be valued members of the society. They should be treated with respect, listened to and kept safe.

Even though it is unlikely that this document will need to be referred to in the future, this policy will act as a reference should any child using the site turn to an adult for help regarding any aspect of their private life.

Data Protection Policy

The Pernicious Anaemia Society holds three types of information which are covered by this policy.

Organisational Information – this is mostly information which is publicly available but can also contain some personal information.

Personal Information – including the names, addresses and job titles of members of the society and perhaps their families and friends.

Sensitive Personal Information – this will usually be information about any employees or volunteers. However, the society acknowledges and recognises that it can hold sensitive information about other people, including Trustees, Members and Visitors to any meetings or seminars or to any offices occupied by the society. An example of this would be that the dietary requirements at the Annual General Meeting might allow a person’s religion to be deduced, or the sexual orientation of a person might be disclosed by the person on the society’s online forum.

Equal Opportunities Policy

The Pernicious Anaemia Society recognises that people are different and have different needs and different abilities.

Likewise our members, and others that we help, by providing information, help and support will also have different needs and abilities.

The Society believes that everyone who needs information, help and support should be able to access this regardless of their ability and that the society should treat differently-able people in a positive way and provide for the needs of all people regardless of their ability.

The Society recognises and seeks to comply fully with the legislation of the United Kingdom that relates to Equal Opportunities for all.

Protection of Vulnerable Adults Policy

The characteristics of adult abuse can take a number of forms and cause victims to suffer pain, fear and distress reaching well beyond the time of the actual incident(s).
Victims may be too afraid or embarrassed to raise any complaint. They may be reluctant to discuss their concerns with other people or unsure who to trust or approach with their worries.
There may be some situations where victims are unaware that they are being abused or have difficulty in communicating this information to others.

Strategic Plan

Since the formation of the society we have demonstrated that there is a need for, and the demand for, a society that will provide Information, Advice and Support to sufferers of Pernicious Anaemia, their family and friends.
This plan strives to put in place the necessary structure to enable the society to better support its existing members, and to provide effective support to new members. We are currently in the process of implementing this plan.

Welsh Language Policy

The Pernicious Anaemia Society acknowledges the fact that Wales is a bilingual nation and adopts the principle that it will, it its operation in Wales, treat the Welsh and English languages equally.

The Pernicious Anaemia Society is committed to projecting a bilingual image in Wales and therefore will develop its use of Welsh on visual and printed material such as signs, websites, and corporate branding.

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