Privacy Policy Pernicious Anaemia Society

Updated September 2020

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: dpo@pas.org.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 dpo@pasoc.org.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 membership@pasoc.org.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 newsletter@pasoc.org.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 dpo@pas.org.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?

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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