How Will Your Personal Data Be Processed?
This section applies to a patient diagnosed with ALS, family member of a patient diagnosed with ALS or any other interested party who registers on the platform of the ALS League.
- Which Personal Data? We may process the personal data you provide us when you complete the registration procedure or later through the website, such as your personal identification data (name, phone number, home and email address), personal traits (age, date of birth), national registration number, current occupation and data relating to marriage or concubinage (name, date of birth and current occupation of partner).
- Legal Basis? The legal basis is consent by the registered person [art. 6.1.(a) General Data Protection Regulation]. We will not process the personal data without your consent.
- Purpose of Processing? The personal data is processed in order to establish and maintain a record of patients diagnosed with ALS and other interested parties. Without the processing of the personal data, we are unable to identify these persons and effectively communicate with them for follow-up.
- Which Personal Data? Additionally, we may process the data relating to physical and mental health concerning the patient diagnosed with ALS, such as medical file, medical reports, information relating to diagnosis, result analysis, treatments relating to ALS as well as the name of the treating doctors, medical therapists and hospital.
- Legal Basis? The legal basis is explicit consent by the registered person [art. 9.2.(a) General Data Protection Regulation]. This type of personal data is characterized as sensitive data. Therefore, we will not process the personal data unless you have given us your explicit consent.
- Purpose of Processing? The personal data is processed for the purposes of administering and counselling of patients, which includes follow-up of diagnosis and treatment of patients diagnosed with ALS and counselling concerning healthcare and social services. Without the processing of this type of personal data we cannot provide our services to patients diagnosed with ALS and other interested parties, such as acting for and on behalf of patients and interested parties, facilitate exchange of data with hospitals, supply of information and advice, accommodation of useful aid and administrative support.
This section applies when you purchase a product or service via our web store, the ALSshop.
- Which Personal Data? When you place an order, we may process your personal identification data (name, phone number, home and email address). We will not collect, nor process your payment information. The processing of your payment information will be conducted by our third-party payment processor (Ogone).
- Legal Basis? The legal basis is necessity for the performance of a contract, entered into between the customer and the ALS League [art. 6.1.(b) General Data Protection Regulation] and necessity for compliance with a legal obligation to which the ALS League is subject to [art. 6.1.(c) General Data Protection Regulation].
- Purpose of Processing? We process the personal data for the purposes of fulfilling our contractual obligations. Without the processing of this type of personal data we are incapable of verifying with whom a contract is entered into, to deliver the purchased goods or services and to communicate with clients in order to send an invoice, order confirmation or receipt relating to the purchased goods or services and other necessary and relevant information.
This section applies when you donate a sum to support the ALS League.
- Which Personal Data? When you donate, we may process your personal identification data (name, email address).
- Legal Basis? The legal basis is the necessity for the performance of a contract or service, to the benefit of the donor [art. 6.1.(b) General Data Protection Regulation].
- Purpose of Processing? The processing of the personal data is necessary in order to accommodate the wish of the donor to donate a sum. Without the processing of this type of personal data we cannot confirm who the donor is, and, if necessary, to provide the donor with a letter of acknowledgement or receipt for tax purposes.
Members of the ALS League-Magazine
This section applies when you subscribe to our newsletter, the ALS League-Magazine.
- Which Personal Data? We may process your personal identification data (name, home and email address).
- Legal Basis? The legal basis is consent by the registered person [art. 6.1.(a) General Data Protection Regulation].
- Purpose of Processing? The processing of the personal data allows us to keep subscribers to the newsletter informed about important events related to the disease of ALS. Without the processing of this type of personal data we are unable to learn who is subscribed to the newsletter and to what address we may send the newsletter. If you do not wish to receive news via the newsletter anymore, you have the ability to opt out of receiving it at any time by clicking the opt-out button that accompanies every edition of the newsletter.
Participants of ALS-related Events
This section applies when you register through the website to participate in ALS-related events, i.e. events that are organised, endorsed or in any way affiliated with the ALS League.
- Which Personal Data? We may process the personal identification data you provide us when you complete the registration procedure (name, telephone number, home and email address).
- Legal Basis? The legal basis is necessity for the performance of a contract or service, to the benefit of the participant [art. 6.1.(b) General Data Protection Regulation].
- Purpose of Processing? The processing of the personal data has the objective to register the persons that participate in ALS-related events. Without the processing of this type of personal data, we are incapable of determining who participates in an ALS-related event and we cannot communicate with participants in case they require assistance in attending an ALS-related event.
Disclosure of Personal Data
The ALS League relies on database facilities for the storage and management of the collected personal data. During this process, the rules of the General Data Protection Regulation and the international data protection rules governing the transfer of data across geographic borders will be respected. The collected personal data is encrypted and the encryption key is locked securely in a separate vault.
Within the framework of our Services
We may disclose your personal data to third parties as part of the provision of our services. For example, we can disclose your personal data to organisers of ALS-related events, or to medical therapists, hospitals and social security entities as part of the assistance and support we provide as a service. Importantly, we will never disclose any information concerning the physical and mental health of patients diagnosed with ALS to third parties without your express consent.
We may use your personal data within the framework of the (potential) enforcement of our rights, which result from contractual and non-contractual obligations, e.g. when you don’t pay a sum to which you are contractually obligated to. Moreover, we may use your personal data when you are involved in a dispute with the ALS League or a third party in order to settle or remedy the dispute within the context of legal, mediation and/or arbitration proceedings. The legal basis is processing necessary for the legitimate interests of the ALS League (art. 6.1.(f) General Data Protection Regulation). The purpose of processing is the enforcement of our rights and settlement of actual and potential disputes.
How Long Do We Retain Your Personal Data?
Your personal data will not be retained for a period longer than necessary for the fulfilment for the purposes for which we have processed your personal data, unless required otherwise by law. We retain and use your personal data to fulfil our legal obligations, to settle disputes and to enforce our agreements, taking into account the following criteria:
Criteria for retention
- The purpose for which the personal data was processed
- The legal basis upon which the personal data is collected (e.g. personal data will be retained up until the moment of withdrawal of prior consent)
- Legal obligations to which we must adhere (e.g. tax legislation)
- The costs and efforts associated with the retention of the personal data
- The relationship with the relevant data subjects
Specific retention period
We use a specific retention period vis-à-vis the following type of personal data:
- The information relating to the placement of an order will be retained for a period of minimum 10 years starting in the year in which the order is placed, in accordance with Belgian taxation law.
- Payment information and financial information concerning donations will be retained for a period of minimum 10 years starting in the year when the donation was made, in accordance with Belgian taxation law.
How Do We Protect Your Personal Data?
The ALS League is concerned with the protection of your privacy and personal data. We implement the appropriate technical safeguards in order to adequately protect and secure your personal data. When you enter certain information (such as passwords) on our website, we encrypt the input of this information with the use of secure socket layer technology (SSL), recognisable by way of the “green key” next to the “https” web address. This implements a secure layer between our servers and your internet browser where the encryption key is placed in a separate secured vault. All transmission of data on our website is secured with SSL.
Additionally, your personal data is protected against intentional and unintentional loss by performing repeated backups on a daily and monthly basis, amongst other things. All backups are stored in a secured environment and are not accessible via the internet. We employ all possible safety measures that can reasonably be expected in order to protect our website and keep it up-to-date.
What Are Your Rights?
We strive to be as transparent as possible in relation to the information we collect about you. You have a right of access to the personal data collected about you and you may exercise that right by requesting a copy of that data. We do, however, retain the possibility to demand a small fee in order to cover administrative expenses.
Further, we want to make sure your personal data is accurate and remains up-to-date. Therefore, you may ask us to rectify or delete certain personal data that is considered inaccurate by you. We will put in the efforts to make sure your data is then made up-to-date, rectified or deleted as soon as possible.
If you wish to exercise one or more of the aforementioned rights, please contact us through privacy@ALS.be or by sending us a written letter to this address where we will try and help you as quickly as possible. In case you are still convinced that your personal data is being processed unlawfully or if you have any further objections with which we cannot help you, you may direct your attention to the supervisory authority, i.e. the Data Protection Authority (www.dataprotectionauthority.be).
What About Links To Other Websites?