The Neurofibromatosis Association
(t/a Nerve Tumours UK)
Update: April 2023
As the General Data Protection Regulation is introduced, this policy may be updated periodically for your benefit. If there are significant changes to how we handle your data, we will notify our members, subscribers and supporters via email.
Nerve Tumours UK, recruits data as part of its day-to-day operation. The charity has always securely taken care of the data it recruits. However the recent legislation has raised the bar for organisations across Europe, and as such we have reviewed methods, policies, and technologies involved to ensure we remain secure and compliant.
We want to remain totally transparent: We collect data so that we can improve the charity and the services we deliver.
We also collect data and permissions so that we can contact you about campaigns and charity news.
We never sell on your data to anyone. Ever.
The main charity website www.nervetumours.org.uk
Nerve Tumours UK's Online Shop
Donations made via the Shop
Memberships, Subscriptions and shop accounts
Online Shop Policies
Nerve Tumours UK does not endorse unethical fundraising (as defined by the Fundraising Regulator), unwanted communications, and takes all reasonable precautions to guard the personal and non-personal data and information we record. We also afford the right to erasure (also known as the right to be forgotten) for all of our supporters, members and beneficiaries.
For purposes of this Agreement, “Site” refers to the Company’s website, which can be accessed at www.nervetumours.org.uk. “Services” refers to the Charities services accessed via the charity, in which users can receive support with Neurofibromatosis, support the charity, and take part in the Neurofibromatosis community within our social media channels and website. The terms “we,” “us,” “company” “charity” and “our” refer to The Neurofibromatosis Association, which is Company no. 3798407, Charity registration 1078790, or Scottish Charity Office registration SCO45051.
We collect “Non-Personal Information” and “Personal Information.” Non-Personal Information includes information that cannot be used to personally identify you, such as anonymous usage data, general demographic information we may collect, referring/exit pages and URLs, platform types, preferences you submit and preferences that are generated based on the data you submit and number of clicks. Personal Information includes your email, name, contact details, and time of submission which you submit to us through contact forms and registration forms on our site.
1. Information collected via Social Media services
The charity collects non-personal data provided by the analytic services of social media websites such as (but not limited to) Facebook, Twitter, LinkedIn and Instagram. This data includes comments, messages, likes, clicks and shares you may have enacted on our pages. This data is not personal to you, and is used to determine demographics marketing.
The charity collects non-personal data provided by the analytic services tied to our website www.nervetumours.org.uk, such as (but not limited to) Google Analytics. This data includes page views, clicks, dwell times, and actions that you may have enacted on our pages. This data is not personal to you, and is used to determine the effectiveness of our website.
The charity collects personal data provided by you via contact forms that are hosted either on our website, or by third parties. These forms will always be signposted clearly as to their purpose, and with whom the data will be shared. However, in all cases the data will be processed and accessed by charity staff. In each case, the act of submitting their data to the charity is perceived as an act of permission: the user permits their data will be processed by the charity and any relevant third parties. This will be to enable registrations, event participations, or to deliver other charity services.
3. Information you provide us by purchasing from our Online Shop
The charity collects non-personal data provided by the services tied to our shop https://shop.nervetumours.org.uk such as (but not limited to) Shopify, and Google Analytics. This data includes page views, clicks, dwell times, and actions that you may have enacted on our pages. This data is not personal to you, and is used to determine the effectiveness of our website.
The charity collects personal data provided by users via their purchases made on the online shop. This information is stored in third party databases such as (but not limited to) Shopify and third party plugins such as (but not limited to) Paywhirl, Inkthreadable, Twofifteen and EasyReports. These enable the services of the shop. The data is occasionally accessed by additional third parties who work in the interests of The Neurofibromatosis Association such as web developers. By completing the necessary purchase forms, users agree to the storage and processing of data relating to their purchase.
These forms will always be signposted clearly as to their purpose, and with whom the data will be shared. However, in all cases the data will be processed and accessed by charity staff or charity contractors. In each case, the act of submitting their data to the charity is perceived as an act of permission: the user permits their data will be processed by the charity and any relevant third parties. This will be to enable registrations, purchases, donations, event participations, or to deliver other charity services.
3.1 Donations made via the Online Shop
Donations made through the https://www.nervetumours.org.uk/help-by-donating page are processed by the online shop service. Users can donate to The Neurofibromatosis Association using this platform and also have the opportunity to provide Gift Aid information.
The charity collects personal data provided by you via donations made on the shop. This information is stored in third party databases such as (but not limited to) Shopify and third party plug-ins that enable the services of the shop. The data is occasionally accessed by additional third parties who work in the interests of The Neurofibromatosis Association such as web developers. By completing the necessary donation forms, users agree to the storage and processing of data relating to their donation and any relevant Gift Aid data.
These forms will always be signposted clearly as to their purpose, and with whom the data will be shared. However, in all cases the data will be processed and accessed by charity staff or charity contractors. In each case, the act of submitting their data to the charity is perceived as an act of permission: the user permits their data will be processed by the charity and any relevant third parties. This will be to enable the processing of donations, Gift aid claims, and other charity services.
3.2. Membership or Subscription Accounts made via the Online Shop
In addition to the information provided automatically by your browser when you visit shop.nervetumours.org.uk, users are given the option of becoming a member of the charity at https://shop.nervetumours.org.uk/pages/membership or providing monthly donations at https://www.nervetumours.org.uk/help-by-donating .
This is achieved by selecting a service or subscription, registering with the service and entering your email address, creating a user ‘screen’ name and a password. Once the process is complete, users are able to manage their subscriptions and memberships via the https://shop.nervetumours.org.uk/pages/manage-subscriptions portal, clearly marked at shop.nfauk.org. The charity takes no responsibility for the users subscriptions. Users can edit, update, and remove their subscriptions at any time.
3.3 Shopify Store Policies
The Neurofibromatosis Association (t/a Nerve Tumours UK)’s Shopify Terms of Service can be found here: https://shop.nervetumours.org.uk/18704613/policies/32335566.html
The Neurofibromatosis Association (t/a Nerve Tumours UK)’s Shopify Refund Policy is can be found here: https://shop.nervetumours.org.uk/18704613/policies/32335438.html
4. Information you provide us when you subscribe to our e-mail marketing updates via the online Shop or www.nervetumours.org.uk/updates page
Definition: For the purposes of this point, an “e-mail update” is an email sent for marketing purposes, or to convey information to subscribers on our mailing lists. These emails are not the same as day-to-day correspondance between charity employees via email, which staff will do to deliver the operations and services of the charity.
The Neurofibromatosis Association uses third parties that specialise in data protection and online communications to build our email communications and mailing lists. These third parties include, but are not limited to Shopify and Campaign Monitor.
When an individual subscribes to one of our mailing lists, they grant permission to The Neurofibromatosis Association to store, and use that contact information to make regular contact regarding the subject matter agreed in the subscription process. This will always be clearly identified. For example: The Marketing emailing subscription list is described as “Charity shop discounts, Events and Campaigns, News and Information”. Users subscribed to that list will only ever be contacted within those parameters.
4.1. Membership of Mailing Lists
The Neurofibromatosis Association will not add your name and email address to a mailing list without your permission. The unsubscription process will be linked at the bottom of each email sent via these lists.
The Neurofibromatosis Association website and digital services are not knowingly directed to anyone under the age of 13. The Site does not knowingly collect or solicit information from anyone under the age of 13, or allow anyone under the age of 13 to sign up for the Service.
In the event that we learn that we have gathered personal information from anyone under the age of 13 without the consent of a parent or guardian, we will delete that information as soon as possible. If you believe we have collected such information, please contact us at firstname.lastname@example.org.
In general, the Personal Information you provide to us is used to help us communicate with you. For example, we use Personal Information to contact users in response to questions, solicit feedback from users, provide technical support, and inform users about promotional offers.
We may share Personal Information with outside parties if we have a good-faith belief that access, use, preservation or disclosure of the information is reasonably necessary to meet any applicable legal process or enforceable governmental request; to enforce applicable Terms of Service, including investigation of potential violations; address fraud, security or technical concerns; or to protect against harm to the rights, property, or safety of our users or the public as required or permitted by law.
We implement security measures designed to protect your information from unauthorised access. Your account is protected by your account password and we urge you to take steps to keep your personal information safe by not disclosing your password and by logging out of your account after each use. We further protect your information from potential security breaches by implementing certain technological security measures including encryption, firewalls and secure socket layer technology. However, these measures do not guarantee that your information will not be accessed, disclosed, altered or destroyed by breach of such firewalls and secure server software. By using our Service, you acknowledge that you understand and agree to assume these risks.