Privacy Policy

This Privacy Notice (“Notice”) for personal data is provided by the OIF Network, a UK charity registered under charity number 1100022 in England and Wales that operates throughout African nations and supports the OI community in the UK and Ireland.

OIF Network is dedicated to utilising your personal information in compliance with our obligations under the General Data Protection Regulation (or “GDPR”) being implemented in the UK. We utilise the personal information you give us on this website and in other interactions with you to better understand how you use and are served by our services. This helps us use our resources more effectively to serve OI-affected persons and their families.

We may from time to time provide further GDPR data (“Additional GDPR Data”) on certain users of our website. Please read this notice together with the Additional GDPR Information if you are a member of that specific user group. In the event of a dispute, the provisions of the Additional GDPR Information shall apply instead of the terms of this Notice. Additionally, this Notice explains to you how we gather, utilise, and protect your personal information. According to the GDPR’s definition, all information about a named or identifiable natural person is deemed personal data.

You can provide us with personal data when:

When asking us for information or when supporting us through donating money, becoming a member, registering for a training session or event, completing an online form, answering surveys, communicating with us via phone, email, mail, or social media, engaging with us on our social media channels, organising fundraising on our behalf, sharing your experience, providing feedback, filing a complaint, volunteering, or working with us. you sign up for an event sponsored by another organisation that agrees to split the proceeds with us, such as a sporting event; you donate to us through a fundraising platform or when you make a third-party reservation for an event.

In connection with an application, you submit to us, you ask third parties to furnish us with information. For instance, to help with the review of your application, we could ask you to get information from medical professionals who are familiar with you.

In these situations, you will have permitted us to access this information, or you will have permitted the third party to share your personal information with us. The information we have on you might be your name, address, phone number, email address, date of birth, financial information, and visa or credit card information, depending on whether you provided it to us or requested it.

Additionally, we could have more information on dietary needs and accessibility, especially if you register for events. You are welcome to share whatever information you have with us about your experiences coping with OI. We acknowledge that a portion of your data is sensitive and that in most situations, processing this sensitive data will require your express agreement. We shall notify you if we are depending on an alternative legal foundation. Please note that we would like to inform you that our organisation does not exchange, sell, or rent your personal information to other parties for any reason, including marketing. We don’t do telemarketing, but we could give you a call for administrative reasons—for instance, to make sure your information is up to date and correct our records—or about your membership or gift.

Information on GDPR

Rights of Data Subjects: The General Data Protection Regulation (GDPR) grants you several rights, which may include the ability to withdraw any consent you may have given for data processing, to find out how your personal data is being processed, to object to that processing, to use your right to data portability, and to have your personal data updated, erased, or have its processing restricted. If you withdraw your consent, we could still process your data if we have another reason to do so. We’ll let you know if this becomes important to you. Additionally, you have the right to file a complaint with a supervisory authority, which is often the authority in charge where you live or work.

We process data to support our legitimate interests in providing you with comprehensive information on our philanthropic efforts relating to OI, and this processing is justified by law. Those in attendance: We may provide this personal information as part of an application to donors and grant providers, banks, payment processors, IT, facilities, and event providers, legal and professional advisors, tax authorities, other governmental bodies (particularly about Giftaid records), and other third parties. If we have the necessary agreement, we may also share your information with medical experts, researchers looking into OI and related conditions, and other organisations that we are trying to get funding from to assist our work.

Use of Cookies

It is also important to us that we notice that our website uses cookies to distinguish you from other users. During your visit to our website, the following information could be collected automatically: Technical information includes things like the IP address that your device used to connect to the internet, the type and version of your browser, the time zone you’re in, the types and versions of browser plug-ins, the operating system, and the device type; analytical information includes information about your visit, like how you found our website, how long you spent there, and which pages you looked at. You can decline to accept cookies by using the cookie banner that we use on this website and by removing cookies from your browser.