Data Privacy Policy
Your personal data is collected and processed by the International IgA Nephropathy Network (IIgANN), hereafter referred to as “IIgANN.”
The International IgA Nephropathy Network (A Company Limited by Guarantee) is registered at 124 Finchley Road, London, NW3 5JS, United Kingdom of Great Britain and Northern Ireland, under the Company registered number (UK): 05105027 and the Charity registered number (UK): 1117866.
IIgANN acts as the data controller for the personal data collected via its website.
Scope of the Privacy Statement
IIgANN values privacy and is committed to protecting the personal data of all its stakeholders with the utmost care. We process personal data only in a fair and lawful manner. This Privacy Statement applies to our members and website visitors concerning the personal data collected and processed by IIgANN through this website and related services.
This Privacy Statement provides essential information on how IIgANN, as the data controller, collects and processes personal data, the purposes for which this data is used, and your rights as a data subject.
Processing of Personal Data
Personal data can be defined as any information that allows a natural person to be identified, directly or indirectly. You can provide us with your personal data in the context of the following activities, for the corresponding purposes and based on the stated grounds:
- Newsletter: By subscribing to our newsletter, you provide your email address. Our website collects these data based on your consent and for the purpose of sending you relevant information and updates.
- Website analytics: By accepting the cookies on the website, you consent to IIgANN processing your IP address, country and behavioural data.
- Other purposes: We may sometimes need to process personal data to comply with its legal obligations.
IIgANN treats your personal data as confidential and commits to process it only in a way that is compatible with the purposes for which the data were initially collected.
Your Rights as a Data Subject
At all times, the data subject has the possibility to exercise his or her rights as described in the General Data Protection Regulation. The data subject can exercise the following rights:
Right of Access
You have the right at any time and free of charge to access your personal data and to request a copy of the personal data that IIgANN collects about you.
Right to Rectification
You always have the right to have incorrect personal data corrected, or incomplete personal data completed.
Right to Erasure (“right to be forgotten”)
You can request to have your personal data erased from IIgANN’s systems.
The request to erase your personal data cannot always be granted due to contractual or legal obligations. IIgANN will take these obligations into account when replying to your request.
Right to Object
You have the right to object to the processing of your personal data if the processing takes place on the ground of the legitimate interest of IIgANN or on the ground of the public interest. We will stop processing unless we can prove that there are compelling legitimate grounds for the processing or for the exercise of legal claims. You can also object in the case of direct marketing, so the personal data will no longer be processed for these purposes.
Right to Withdraw Consent
For the processing of your personal data collected by IIgANN with your consent, you can withdraw your consent at any time. For example, you can always unsubscribe from the newsletters. However, the withdrawal of your consent does not apply to processing previously carried out by IIgANN.
Right to Restriction of Processing
In certain cases, the data subject is entitled to obtain the restriction of the processing of his or her personal data. We will continue to store your data, but we will restrict its use. You can e.g. submit this request when you think that your personal data is inaccurate, or the processing by IIgANN is unjustified. We only have to grant these requests in specific cases as defined by law.
Right to Data Portability
The data subject has the right to receive the personal data concerning him or her, processed by IIgANN, in a structured, commonly used and machine-readable format and/or to transmit those data to another controller.
These rights can be exercised free of charge by sending an e-mail via the Contact us form. We commit to answer your request within one month upon its receipt. It is possible that we request additional information first in order to confirm your identity and ensure the request originates from you.
Right to Lodge a Complaint
If, at any time, you believe that IIgANN infringes your privacy, you have the right to lodge a complaint with the competent Supervisory Authority.
Disclosure to Third Parties
IIgANN will refrain from disclosing or selling personal data of data subjects to third parties as well as publicly disclosing data subjects’ personal data, unless in the following specific cases:
- Personal data can be shared with third party service providers to which IIgANN outsourced certain processing activities. In any case, they are limited to processing your personal data in accordance with our instructions. IIgANN will conclude data processing agreement with such processors so they are obliged to comply with all obligations required by the applicable data protection legislation.
- If it is required by applicable laws or regulations.
Retention of your Personal Data
IIgANN acknowledges the importance of the protection of personal data. We do not retain your personal data longer than strictly necessary for the realisation of the purposes for which we received the data, or for the execution of a contract or for fulfilling a legal obligation. The retention periods differ with regards to the type of processing activity and the purpose for which the personal data were collected.
The personal data that we collect on the basis of your consent will be kept by us for as long as your consent remains valid.
In all cases, personal data may be retained for a longer period if there is a legal or regulatory reason to do so, or for a shorter period if the data subject objects to the processing of his/her personal data and if there is no longer a legitimate reason to retain them.
We guarantee to only provide limited access to archived data and to remove or render anonymous your personal data if the retention period has passed.
Security and Confidentiality of Your Personal Data
IIgANN has taken technical and organisational security measures to prevent the destruction, loss, falsification, alteration, unauthorized access or disclosure of your personal data to third parties and any other unauthorised processing of these data.
We have made every effort to ensure the confidentiality, integrity and availability of the information systems and services that process personal data. These measures include physical and operational security measures, access control, awareness raising and confidentiality clauses. All our employees and third parties engaged by us are obliged to respect the privacy and security of your data.
Contact Details
If you have comments, questions or concerns about any of the information in this Statement, or any other issues relating to the processing of your personal data by IIgANN, please contact us via the Contact us form.
In the event you prefer to contact us by post, please see below our address:
THE INTERNATIONAL IgA NEPHROPATHY NETWORK
124 Finchley Road
London
NW3 5JS
United Kingdom of Great Britain and Northern Ireland
Website: https://www.iigann.org/
Changes to this Privacy Statement
We may amend or update this Privacy Statement from time to time to reflect changes in our practices with respect to the processing of your personal data, or changes in applicable law. We will be doing this by posting the updated version on this website. When we publish changes to our Privacy Statement, we will change the date and version number of the “last update” of our Privacy Statement. Significant changes will be reported on our homepage. Nevertheless, we encourage you to read our Privacy Statement periodically.
This version of the Privacy Statement is effective as of June 2024.