Policies

By continuing to use this site you have accepted these terms and conditions of use.

Please note: This site and the information contained within should not be used as a replacement for the care you receive from your healthcare provider. 

General disclaimer: Neither we nor any third parties provide any warranty or guarantee as to the accuracy, timeliness, performance, completeness or suitability of the information and materials found or offered on this website for any particular purpose. You acknowledge that such information and materials may contain inaccuracies or errors and we expressly exclude liability for any such inaccuracies or errors to the fullest extent permitted by law.

Your use of any information or materials on this website is entirely at your own risk, for which we shall not be liable. It shall be your own responsibility to ensure that any products, services or information available through this website meet your specific requirements.

This website contains material which is owned by or licensed to us. This material includes, but is not limited to, the design, layout, look, appearance and graphics. Reproduction is prohibited other than in accordance with the copyright notice, which forms part of these terms and conditions.

All trademarks reproduced in this website, which are not the property of, or licensed to, the operator are acknowledged on the website.

The PAPAA logo is a registered trade mark under number 2448757 and cannot be used without our prior permission.

Unauthorised use of this website may give to a claim for damages and/or be a criminal offence.

You may not create a link to this website from another website or document without PAPAA’s prior written consent.

Your use of this website and any dispute arising out of such use of the website is subject to the laws of England and Wales.

Site owner and operator
This site is operated by the Psoriasis and Psoriatic Arthritis Alliance which is also known as PAPAA and is a registered charity in England and Wales No:1118192 and a company limited by guarantee No: 6074887, whose registered office is 30 Orange Street, London, WC2H 7HF.

If you continue to browse and use this website you are agreeing to comply with and be bound by the following terms and conditions of use, which together with our privacy policy govern PAPAA's relationship with you in relation to this website.

The term 'PAPAA' or 'us' or 'we' refers to the owner of the website. The term 'you' refers to the user or viewer of our website.

If you need to contact us  we will endeavour to deal with your enquiries in a timely and courteous manner.

The following terms and conditions of use apply:
The content of the pages of this website is for your general information and use only. It is subject to change without notice.

Goods and services are for education purposes and include:

• information leaflets
• magazines
• books
• training programmes
• video content
• audio content
• images.

From time to time we may include material for promotional and awareness programmes, which may include (please note this list is not exhaustive):

• clothing (T-shirts, caps etc.)
• pens
• pencils
• key rings
• other similar items.

Prices: The prices of the goods and services are displayed in pounds sterling. Prices are subject to change without notice. PAPAA is not registered for Value Added Tax (VAT), therefore the price listed is the price you pay.

We may from time to time offer discounts or website users’ offers. These will be limited and we may withdraw these without notice.

The cost of delivery to addresses in the UK, is included in the prices listed, although we may limit the amount that can be ordered for free items or may despatch these in small packages.

We reserve the right to refuse large requests for free items, if we believe these will be used in an inappropriate manner, or is not inline with the philosophy of the charity as listed in our aims and objectives.

Payments can be made by cash in person (no liability will be accepted for cash lost in the post), by cheque or credit/debit card or bank transfer or any other secure recognised payment method. We reserve the right to refuse payments for any goods or services.

All goods and services must be paid for in advance. All goods remain the property of PAPAA, until cleared funds appear in our accounts.

If goods are delivered and subsequently these were found to be obtained using fraudulent methods, PAPAA reserves the right to pursue recovery of the goods or compensation for loss of income.

Delivery times: Goods will be despatched within 30 days of the order being processed, most orders if goods are held in stock will be despatched within 2 working days.

We will use Royal Mail standard post, unless a request is made otherwise. All different delivery requests may be charged at an extra cost.

Right to cancel: You can cancel your order at any time before you receive the goods, and we will refund the total price including any delivery charges (if applicable). If you do not cancel but refuse delivery this will be treated as a breach of contract.

Where goods are lost in transit, we will either send replacement goods or offer a full refund, including any delivery charges (if applicable).

Your right to cancel ends seven days after you receive the goods.

To understand what data we collect and how we use it:  You may choose to restrict the collection or use of your personal information. Whenever you are asked to fill in a form on this website, look for a tick box to indicate that you agree to the terms laid out.

Security: We are committed to ensuring that your information is secure. In order to prevent unauthorised access or disclosure, we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect online.

How we use cookies: A cookie is a small file which asks permission to be placed on your computer's hard drive. Once you agree, the file is added and the cookie helps analyse web traffic or lets you know when you visit a particular site. Cookies allow web applications to respond to you as an individual. The web application can tailor its operations to your needs, likes and dislikes by gathering and remembering information about your preferences.

We use traffic log cookies to identify which pages are being used. This helps us analyse data about web page traffic and improve our website in order to tailor it to user needs. We only use this information for statistical analysis purposes and then the data is removed from the system.

Overall, cookies help us provide you with a better website, by enabling us to monitor which pages you find useful and which you do not. A cookie in no way gives us access to your computer or any information about you, other than the data you choose to share with us.

You can choose to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. This may prevent you from taking full advantage of the website.

External links to other websites: Within this website there are links and signposting to other sites. These are being provided as a convenience and for informational purposes only; they do not constitute an endorsement or an approval by PAPAA of any of the products, services or opinions of the corporation or organisation or individual. PAPAA bears no responsibility for the accuracy, legality or content of the external site or for that of subsequent links. Contact the external site for answers to questions regarding its content. PAPAA, its trustees, medical advisors and employees cannot be held responsible for any inaccuracies that may occur, nor does PAPAA endorse any products that may appear on this site. You should exercise caution and look at the privacy statement applicable to the website in question.

Complaints Procedure:
We aim to ensure that:

• Making a complaint is as easy as possible
• We treat your complaint seriously
• We deal with your complaint promptly and in confidence
• We learn from complaints and use them to review and improve our service

What is a complaint? A complaint is when you tell us you are not happy about the service we provide. It can be about anything and could include:

• When you believe that information is incorrect
• When you believe that you have received a poor quality service
• When you have a problem with a member of staff

How to make a complaint: If you wish to make a complaint you can contact us in any of the ways listed below.

By contacting us via the methods listed on the contact us page.

In person: By appointment at our offices and subject to the complaint not being resolved by the above other methods.

Your complaint: Will be fully investigated and a response issued within 10 working days.

If you are unhappy:  If you are not satisfied with the response, you can ask for it to be referred to another member of the charity or the chief executive.

Site errors: We believe that at the time of uploading all information on this website is correct and we cannot be held responsible for any inaccuracies that may occur, nor do we endorse any products that may appear on this website. If anybody has any reason to believe that the material on this website is inaccurate in anyway please contact us. If you find any errors which are factually, grammatically or typographically incorrect, please let us know and we will make corrections.

All opinions expressed herein are of the contributors and not necessarily those of PAPAA.

Site specification: If you are having trouble viewing pages on this site or pages are not working, please let us know.
The site is designed to work in most browsers and operating systems, but you might find that if you are running old versions or haven't updated your software recently this might be the cause.

Thank you for reading the site rules and adjunct pages. 

These terms and conditions replace all previous versions and are effective December 2024.

How we use cookies: A cookie is a small file which asks permission to be placed on your computer's hard drive. Once you agree, the file is added and the cookie helps analyse web traffic or lets you know when you visit a particular site. Cookies allow web applications to respond to you as an individual. The web application can tailor its operations to your needs, likes and dislikes by gathering and remembering information about your preferences.

We use traffic log cookies to identify which pages are being used. This helps us analyse data about web page traffic and improve our website in order to tailor it to user needs. We only use this information for statistical analysis purposes and then the data is removed from the system.

Overall, cookies help us provide you with a better website, by enabling us to monitor which pages you find useful and which you do not. A cookie in no way gives us access to your computer or any information about you, other than the data you choose to share with us.

You can choose to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. This may prevent you from taking full advantage of the website.

Your rights to privacy and how others use and control your data is governed by law.

Below is our privacy statement and outlines our commitment to how we will treat any information (data) that you have willingly supplied, what it is, how we use it and our legal reason for retaining it.

The General Data Protection Regulation or GDPR, (Regulation (EU) 2016/679) is a regulation by which the European Parliament, the Council of the European Union and the European Commission intend to strengthen and unify data protection for all individuals within the European Union (EU). From 25 May 2018, this new data protection regime is in force.

Your individual rights 

The GDPR includes the following rights for individuals:

• the right to be informed
• the right of access
• the right to rectification
• the right to erasure
• the right to restrict processing
• the right to data portability
• the right to object
• the right not to be subject to automated decision-making including profiling.

How we manage your privacy

PAPAA is an ethical charity and takes your privacy seriously. Any data you  provide, such as your name, address and other personal information is kept only for record keeping, internal audit (6 years) and is stored securely. After that time records are deleted or destroyed securely. We do not share or transfer your data to any third party organisation, except where legally required to do so, such as if you have made a Gift Aid donation, we have to provide your name and postcode to Her Majesty's Revenue and Customs (HMRC), in order to provide proof that the donor is a UK tax payer.

How we get data

All the data we process is derived following willing and direct contact to the organisation. This can be via:

• electronic (website form, emails, attachments etc.)
• written hardcopy (letters, cards, forms surveys etc.)
• telephonic communication (conversations or recorded messages)
• face-to-face (visits, events, meetings)

What we hold - data you provide willingly

If you request any information from us such as leaflets, access to our training courses or you purchase a product, we will only use that data in accordance with the request you made. For example if you request a free information pack, we keep your details in a secure database as indicated above, and will not make any further contact with you, unless you have specifically opted in to receive further information. For example by joining the organisation's register, subscribing to the journal or electronic newsletter, information review group, take part register or specifically asking us to contact you. If we do contact you under any of those circumstance you have the right to see the data we hold, correct that data, or have that data removed permanently (right to be forgotten).

Automatic data gathering

When someone accesses this website, data is collected automatically about pages visited, time on those pages, geographic location, time and date when accessed and the devices used. This information is gathered from the Internet Protocol address (IP address). An IP address is a numerical label assigned to each device connected to a computer network that uses the internet protocol for communication. An IP address serves two principal functions: host or network interface identification and location addressing. No personal data can be accessed if someone knows your IP address. The data we gather therefore is anonymous, but helps us to understand how the site is being used. This in turn helps us in our work and contributes to the future work we may undertake to help provide support and help to people affected by psoriasis and psoriatic arthritis.

Transmission of information

Sending information over the internet is generally not completely secure, and we cannot guarantee the security of your data while it is in transit. This also applies to postal communications, unless sent by a secure 'signed for' option.

Following a link to another website

If you go to another website from this website, read the privacy policy on that website to find out what it does with your information. We can only securely control data we process. 

Survey submissions 

To help inform our work we gather data via surveys. In all cases you have the right to provide your views anonymously, if you do provide your details these will only be used based on the specific reason given on each survey, generally for follow-up purposes or to supply a copy of the survey results.

Feedback and comments

Feedback and comments can be provided to the organisation anonymously and any data gathered is used as stated above. If personal identifiers are provided that data is processed as stated above. 

Subject access request

If you wish to know what data we hold on you, please contact us in writing, and we will provide you with a copy of data we hold. All reasonable requests will be supplied FREE of charge, and within a month of receipt of the request.

Transparency check list

• What information is being collected? 
  Title, name, address, country of residence, date of birth, telephone number, email address, psoriasis status, psoriatic arthritis status, comorbidities, treatments, payment details (in most cases the most minimal data is collected in order to process) requests, optional/opt out are in place to provide choice.
• Who is collecting it? 
  The Psoriasis and Psoriatic Arthritis Alliance (PAPAA) -The Data Controller 
• How is it collected? 
  Electronic, hardcopy, verbal
• Why is it being collected? 
  To process requests for information and services. To provide information to support and justify activities and direction
• How will it be used?
  To complete requests for information, services and support
• Who will it be shared with?
  No one, unless legally required to do so.
• What will be the effect of this on the individuals concerned? 
  Our data collection is only used to respond to willing requests. Our data holding will have no effect on the individuals, beyond that initial use, unless the individual has willingly opted in or requested further interaction with the organisation
• Is the intended use likely to cause individuals to object or complain? 
  No

Date of this statement: 
Decemeber 2024

This policy will be reviewed periodically and is agreed by the board of trustees.

The Psoriasis and Psoriatic Arthritis Alliance (PAPAA) is a registered charity in the UK. Learn more about PAPAA.

Our charity registration number is 1118192.

We are regulated by the Charity Commission for England and Wales and comply with all applicable laws and regulations, including the Charities Act 2011. Search the Charity Commission for England and Wales.

At PAPAA, we believe that maintaining our independence is crucial for providing unbiased support to our constituents. To achieve this, we are transparent about the motivations of our funders and supporters and how these relationships might influence our activities.

Activities are funded through:

• Donations
• Subscriptions
• Charitable grants
• Other income generation

We do not align our activities with commercial marketing or public relations campaigns. We will only associate our name or logo with initiatives if we determine that they serve the best interests of our community.

Collaboration with for-profit organisations

We recognise the value of engaging with commercial organisations. We may accept contributions for specific projects or initiatives, provided these collaborations adhere to the following principles:

• Transparency: Any collaboration with commercial organisations will be disclosed clearly to our constituents, ensuring that the motivations and potential impacts are understood.
• Reimbursement of contributions: We may accept reimbursement for specific contributions made towards our initiatives, provided that these contributions do not influence our independence or the integrity of our work. Any reimbursements will be documented and reported transparently.
• Integrity: We will only partner with organisations that share our commitment to providing accurate, evidence-based information. We do not endorse specific products or make product recommendations.
• Compliance with ABPI guidelines: We adhere to the Association of the British Pharmaceutical Industry (ABPI) guidelines regarding funding and support for patient organisations. Collaborations must align with ethical standards and ensure our independence remains intact.
• Non-bias: Our goal is to remain free from any influence or agendas that may compromise our objectivity. All information we provide is vetted by healthcare professionals or based on published evidence.
• Signposting service: We offer a signposting service to help individuals with psoriasis and psoriatic arthritis make informed decisions about their care. Our guidance is rooted in best practices and independent research.
• Thorough evaluation: We rigorously assess all opportunities for collaboration. This includes conducting comprehensive inquiries into the origins and objectives of potential partnerships, including awareness campaigns and projects.
• Clear stance on non-involvement: If we do not support or endorse a specific event or initiative, this will be communicated transparently. Our non-involvement will reflect the principles outlined in this policy.

By adhering to these guidelines, PAPAA ensures that our work remains aligned with the best interests of our community, while responsibly navigating partnerships with commercial entities.

Why not support us to continue this approach, by seeing how you can get involved.

Fair use policy (FUP)

The Psoriasis and Psoriatic Arthritis Alliance (PAPAA) provides  resources and educational materials to support individuals affected by psoriasis and psoriatic arthritis. We also provide training and support to healthcare professionals (HCPs).

We encourage the use of our content for awareness, education, and advocacy, while also respecting the rights of the original creators of this material. This FUP outlines how individuals, organisations, or other entities may use the materials available on our website, including text, images, videos, and other resources. The policy is designed to ensure compliance with copyright laws while encouraging responsible sharing of information related to psoriasis and psoriatic arthritis.

1. Purpose of fair use

This policy defines how materials on the PAPAA website may be used in accordance with applicable copyright and intellectual property laws in the United Kingdom and internationally. The goal is to encourage responsible sharing and dissemination of information.

2. Permissible uses

You may access, view, and download materials from the PAPAA website for personal, non-commercial, or educational purposes under the following conditions:

• Non-commercial use: Materials may be used for educational, research, or advocacy purposes without seeking permission, as long as the use does not generate profit.
• Attribution: Proper credit must be given to PAPAA as the source. This includes providing a link to the original source when content is shared online. We recommend that you take a ‘screenshot’ of the sources and a date and timestamp at the point of access and use.
• Minimal reproduction: You may use portions of text or images, but large sections of content should not be reproduced verbatim, unless for specific educational or non-profit purposes. Ensure the original meaning and context are not distorted.
• Research and reporting: Articles, reports, or data may be used for academic, professional, or journalistic purposes, provided attribution is given, and the material is not used out of context.

3. Restrictions on use

The following uses of PAPAA materials are prohibited:

• Commercial use: Materials may not be used for commercial purposes without explicit written permission from PAPAA. This includes using content for selling products, services, or other commercial activities.
• Modifying or altering content: You may not modify, alter, or create derivative works based on PAPAA materials without prior authorisation.
• Unlawful use: Materials must not be used in ways that violate laws or infringe on intellectual property rights.
• Mass distribution: You may not distribute PAPAA materials in bulk or use them in a manner that competes with or replaces the original work.

4. Copyright and UK Law

All content on the PAPAA website is protected by copyright under UK law and international treaties.

• Copyright protection: Under the Copyright, Designs and Patents Act 1988 (UK), PAPAA holds the copyright for all website materials, and these rights must be respected. Were quote other sources, there may be further copyright issues to consider.
• Fair dealing: While UK law allows for "fair dealing" (such as for criticism, review, or non-commercial research), any use beyond these exceptions requires permission from PAPAA. If you are unsure whether your intended use constitutes fair dealing, please get in touch with us for clarification.
• Infringement: Unauthorised use of materials may lead to legal action, and infringement of copyright in the UK can result in civil and criminal penalties.

5. Requests for Permission

For uses beyond those outlined in this policy—such as for commercial purposes, full reproduction of articles, or adaptations—please contact us at info@papaa.org . We will review your request and provide permission if applicable.

6. Disclaimer

While we encourage the use of materials available on our website, we do not guarantee the accuracy or completeness of any content. Users are responsible for ensuring that their use complies with copyright laws and aligns with this policy.

7. Contact Us

For questions or further clarification about our Fair Use Policy or how it applies under UK law, please contact the Psoriasis and Psoriatic Arthritis Alliance at: info@papaa.org

We are happy to assist you in understanding and complying with the guidelines for using our materials.

We are committed to making our website accessible to all users, including those with disabilities. We aim to ensure that all users can access the information and services on our site. If you encounter any accessibility issues or need assistance, please contact us. We are continually working to improve our website’s accessibility to meet the requirements of the Equality Act 2010. 

PAPAA has accounts across the popular social media platforms. The philosophy is to provide relevant content that is about or related to our work on psoriasis and psoriatic arthritis. The charity:

• does not advertise or endorse products
• will promote topics and issues to raise awareness
• will only follow organisations that are recognised as authoritative sources
• does not follow individuals
• will act responsibly and is mindful of the impact of inappropriate postings.

Our website may include links to other websites for additional resources or information. These links are provided for your convenience, but we do not control or endorse the content on those sites.

• External Content: We are not responsible for the content, products, or services on third-party websites.
• Privacy & Security: When you visit a linked site, their privacy policy and terms will apply, not ours.
• No Liability: We are not liable for any issues that arise from using third-party sites.
• Link Changes: We may update or remove links at any time.

If you have any questions, please contact us at: info@papaa.org

The board of trustees takes safeguarding seriously, for this policy the following are deemed to be those whom the board believe are likely to need protecting from harm:

• people who benefit from the charity’s work
• staff
• volunteers
• other people who come into contact with the charity through its work

As an employer the charity abides by all legal requirements as laid down by parliament for its area of operation. These include and are not limited to:

• first aid with suitable health and safety arrangements in place
• fire safety
• digital safety
• individual welfare
• whistleblowing

Changes are made as and when statutory requirements and good practice requires.

To manage safeguarding and other health and safety issues the board has a standing agenda item at meetings to review and discuss any issues of concern, with  the view to handle any concerns appropriately, and make changes if required.

With regard to the safeguarding of children, the charity only works with people above the age of 18.

For adults at risk, as the organisation’s work is primarily that of information and educational provision via a website and printed material, the production and processes of producing material is covered by the processes that are part of our PAPAA Pledge.

We are grateful for your support through donations and purchases. Below is our policy regarding refunds and cancellations:

Donations:

1. Non-Refundable: Donations made to PAPAA are non-refundable. Once a donation is processed, we are unable to return the funds. We encourage you to ensure that your donation is correct before submitting.

2. Error or Duplicate Donations: If a donation is made in error or if a duplicate donation is processed, please contact us at info@papaa.org within 7 days. We will review the situation and, if appropriate, offer a refund or resolve the issue.

Purchases of Goods:

1. Returns and Exchanges: If you purchase items from our online shop and are not satisfied, we will accept returns or exchanges within 14 days of receipt, provided the items are in original, unused condition and packaging. Please contact us at info@papaa.org to arrange your return or exchange.

2. Refunds: If you are eligible for a refund, it will be processed back to the original payment method. Refunds will be issued within 14 days of receiving the returned items.

3. Faulty Goods: If an item is faulty or damaged upon receipt, please contact us immediately. We will offer a replacement, exchange, or full refund depending on the situation.

Cancellations:

1. Event Cancellations: If you have made a donation or purchased a ticket for an event and need to cancel, please notify us as soon as possible. Unfortunately, donations for events are generally non-refundable unless the event is cancelled by PAPAA.

2. Shop Purchases: If you wish to cancel a purchase before it is dispatched, please contact us immediately. If the item has not yet been shipped, we can cancel the order and refund your payment.

Contact Information:

If you have any questions or need assistance with a donation or purchase, please contact us at info@papaa.org

We are here to help and will do our best to resolve any issues promptly.

General disclaimer: Neither we nor any third parties provide any warranty or guarantee as to the accuracy, timeliness, performance, completeness or suitability of the information and materials found or offered on this website for any particular purpose. You acknowledge that such information and materials may contain inaccuracies or errors and we expressly exclude liability for any such inaccuracies or errors to the fullest extent permitted by law.

Your use of any information or materials on this website is entirely at your own risk, for which we shall not be liable. It shall be your own responsibility to ensure that any products, services or information available through this website meet your specific requirements.

This website contains material which is owned by or licensed to us. This material includes, but is not limited to, the design, layout, look, appearance and graphics. Reproduction is prohibited other than in accordance with the copyright notice, which forms part of these terms and conditions.

All trademarks reproduced in this website, which are not the property of, or licensed to, the operator are acknowledged on the website.

The PAPAA logo is a registered trade mark under number 2448757 and cannot be used without our prior permission.

Unauthorised use of this website may give to a claim for damages and/or be a criminal offence.

You may not create a link to this website from another website or document without PAPAA’s prior written consent.

Your use of this website and any dispute arising out of such use of the website is subject to the laws of England and Wales.

Site owner and operator
This site is operated by the Psoriasis and Psoriatic Arthritis Alliance which is also known as PAPAA and is a registered charity in England and Wales No:1118192 and a company limited by guarantee No: 6074887, whose registered office is 30 Orange Street, London, WC2H 7HF.

If you continue to browse and use this website you are agreeing to comply with and be bound by the following terms and conditions of use, which together with our privacy policy govern PAPAA's relationship with you in relation to this website.

The term 'PAPAA' or 'us' or 'we' refers to the owner of the website. The term 'you' refers to the user or viewer of our website.

If you need to contact us  we will endeavour to deal with your enquiries in a timely and courteous manner.