Foreword
The Italian Multiple Sclerosis Association (AISM) and its Foundation (FISM), in pursuing their mission, are aware of the importance of protecting and safeguarding the privacy of all persons who come into contact with the AISM movement and its Foundation FISM.
We firmly believe that the protection of personal data is an essential value to allow each person to use our services in total freedom and safety and we work daily to achieve themission ofAISM, facing the challenges and changes that arise by always focusing on the person and his rights, including the protection of personal data.
For these reasons, we would like to provide you with some information, so that you know exactly what data we acquire, how we process them and what measures we put in place to protect them and safeguard your privacy.
This information is provided pursuant to Art. 13 et seq. of EU Regulation 679/2016 (so-called “GDPR”) for data subjects who consult and interact exclusively with the website and pages of AISM and FISM and their subdomains (e.g. sostienici.aism.it, smuoviti.aism.it, regalisolidali.aism.it, giovanioltrelasm.it, etc.) and use the services provided by the Association and its Foundation, to the exclusion of any other websites reached during navigation (e.g. via links).
Who are our stakeholders
AISM and FISM come into daily contact with numerous stakeholders (members, volunteers, users, researchers, supporters, operators) and, therefore, in this informative report we intend to explain who we are addressing and what are the most relevant information we believe you should know.
Members
Those who adhere voluntarily and spontaneously to the associative cause and who wish to receive information about Multiple Sclerosis, events and national and local initiatives promoted by the Association and its Foundation.
Volunteers
Those who want to become part of the AISM movement and who may be interested in having more information on what it means and how to become an AISM volunteer or those who already carry out volunteer activities in favor of the Association.
Beneficiaries
Those who benefit from a service promoted by the Association and/or its Foundation.
Researchers
Those who carry out research activities with the aim of discovering the causes of Multiple Sclerosis, finding the decisive cure and improving the quality of life of people with MS.
Supporters
Those who freely choose to support AISM and its Foundation in the belief that a cure is not far away and that a concrete support to people with MS can guarantee them a better quality of life.
Operators
Those who (neurologists, physiatrists, urologists, ophthalmologists, phoniatrists, physiotherapists, nurses, occupational therapists, speech therapists, psychologists, and other health professionals, etc.) are involved in the management of MS.
Who are theData Controller and Data Protection Officer
Holders:
Associazione Italiana Sclerosi Multipla, with registered office in Via Cavour 181/a, 00184 Rome and national office in Via Operai 40, 16149 Genoa.
Fondazione Italiana Sclerosi Multipla, with registered office in Via Operai 40, 16149 Genova.
AISM and its Foundation have regulated their co-ownership relationship on the basis of a specific agreement as provided for by art. 26 of EU Reg. 679/2016. You may request information regarding the essential content of the agreement by writing to the AISM National Headquarters at the references above.
Data Protection Manager for AISM and FISM
Liguria Digitale, based in Parco Scientifico e Tecnologico di Genova, Via Melen 77, 16152 Genova.
Information provided by the interested party
AISM and its Foundation collect the following data that you have spontaneously provided:
– personal data (such as your name, surname, address, email, date of birth, residence, domicile, etc.) to allow you to use the services we offer or, more generally, to enter into a relationship with AISM and FISM;
– information related to your state of health, with particular reference to your relationship with Multiple Sclerosis, in order to be able to offer you more targeted services that can best satisfy your information needs and meet your requirements
– information relating to your profession (educational qualification, work experience, etc.) for the provision of personalized services or simply for the receipt of your application for an open job position;
– bank details (e.g. iban, credit card, etc.) to allow you to make, among other things, a donation or enrol in a training course.
Purposes and legal basis of the treatment
By accessing and navigating in the different sections, you can join the services reserved for users of our site by entering some personal data about you.
If you make a donation in favour of AISM and its Foundation
The personal data you voluntarily provide to make a donation are processed for the following purposes:
a) management of your donation:the processing is based on the relationship established with the interested party and is necessary to allow the Holders to carry out all the phases related to the donation, including instrumental and related activities (e.g. communications on payments, issuance of receipts, etc.), or to comply with applicable regulations (tax, civil, administrative).
b) information and awareness of activities, projects or initiatives. As a donor, we process your data to inform you about the initiatives and projects promoted by AISM and its Foundation, and their processing is based on legitimate interest. In particular, we consider it essential to establish and maintain a constant and lasting dialogue and relationship with our supporters, in order to promotethe associative cause, to inform them and make them more aware of the main themes related to Multiple Sclerosis and similar pathologies, as well as to demonstrate our constant commitment to the realization of our statutory mission. Should you no longer wish to be informed or to remain in contact with AISM and its Foundation, we remind you that you can always oppose the treatment of your data according to the modalities better described in the following paragraphs.
Finally, we remind you that in the case of donations made through iban or credit card, AISM and FISM undertake to ensure that payments are made with the utmost confidentiality and security. This financial information may be known by AISM and FISM, through their authorized personnel or by the issuing institution or payment service (e.g. Paypal, Stripe, etc.). It should be noted, on the other hand, that AISM and FISM do not assume responsibility with reference to unauthorized or fraudulent use, in favour of AISM or FISM, of your credit card by third parties.
If you join as a member of the Association
The personal data that you spontaneously conferred in order to become an AISM member are processed for the following purposes
(a) management of the membership relationship: you will be able to receive our communications foreseen in compliance with the statutory rules and internal administrative procedures (e.g. convocation to the meetings of the organs, management of the membership fee, etc.) or, more generally, for sending the membership card and the Association’s information material. The treatment of the data takes place on the basis of the associative contract to which you have voluntarily adhered.
b) registration on the AISM website or that of the Partnersto take advantage of the discounts and conventions reserved for members and the processing of the data is based on your express consent.
c) fulfilment of the obligations provided for by laws, regulations, Community legislation or orders of Authorities to which the Association is bound.
Finally, we may ask you for information regarding your health status (e.g. whether or not you are a person with MS, etc.) in order to customize and improve the quality of our services and respond as best as possible to your needs, or in execution of specific statutory provisions (e.g. the fee reserved for persons with multiple sclerosis for election to membership offices) and the processing of data concerning you is based only on your express consent.
If you want to become a volunteer
The personal data you voluntarily provided are processed for the management of the volunteer activity and related administrative activities (e.g. payment of expense reimbursements, etc.) as well as, in fulfillment of obligations under laws, regulations, EU legislation or orders of authorities. The legal basis of the treatment is the voluntary relationship of which you intend to be part. In the event that they are required for specific purposes related to voluntary activity, data relating to your health status, the same will be treated only with your express consent.
If you participate in a prize initiative
Your personal data are processed for
–managing your participation in the initiative linked to one of our fundraising eventsnational(e.g. Mela, Gardensia, Erbe Aromatiche): the treatment is based on the relationship established with the participant and is necessary for the management of all the phases connected to the prize initiative (administrative management and fulfilments of the law, contact with the winners and management of the relative fulfilments, etc.) in which you have participated by accepting the norms foreseen in the specific Regulations;
–information and awareness on AISM and FISM activities or initiatives:to send you personalized communications to raise awareness or updates on the institutional activities of AISM and FISM, and the processing of data takes place on the basis of your express consent.
If you subscribe to a newsletter or submit a request to the toll-free number
Your personal data are processed to inform you about the initiative, project or issue in which you have expressed interest by filling in the appropriate form on the websites of AISM and its Foundation. Processing for this purpose is based on the relationship established between the Data Controller and the interested party, and is necessary in order to respond to your request for consultancy and support, or to be informed and updated on the institutional activities of AISM and FISM. In some cases, information relating to your state of health (relationship with MS, etc.) may be requested in order to be able to offer you more targeted services (e.g. Filo Diretto) that can best meet your information requirements and respond to your needs, and in this case processing is based on your express consent.
If you subscribe to the AISM Community
If you register with the AISM Community, your personal data will be processed to provide Community Services dedicated to registered users who have accepted the rules of use of the forum contained in the Regulations. The treatment of your data is necessary to use the functionalities of the platform (e.g. to share experiences, to get information, to express doubts and questions) and takes place on the basis of your express consent.
If you join an advocacy initiative
Your personal data are processed for the management of your request to join an advocacy initiative to protect the rights of people with MS and similar diseases (eg signing the Charter of Rights), to download the information material of the Association (eg Barometer) or, more generally, to stay informed about the institutional activities of the Association and its Foundation. The provision of data is optional and takes place on the basis of your express consent.
If you send us your story to publish it on the blog
Your personal data spontaneously conferred by you are processed for the following purposes:
(a) to document, promote and publicize your story on the “Giovani Oltre la MS” blog.
b) for communication activities, institutional campaigns and publication/dissemination on websites, social networks and all communication channels of AISM and FISM.
The processing of your personal data is based on your express consent and is necessary in order to publish your story on the Association’s blog.
If you participate in a training coursefor operatorssocio-sanitary
Your personal data are processed for the following purposes
(a) management of your participation as a learner/teacher in events, initiatives, training courses organized by AISM and/or its Foundation;
b) implementation of the activities necessary to allow the registration and participation of the person concerned in the desired event and to send the communications and information concerning the event itself (e.g. organizational aspects; management of payments; administrative aspects for the release of CME credits, if any; documentation of the activities carried out; informative/training material such as slides, abstrarct, etc.);
c) dispatch of informative material by AISM and FISM concerning, in particular, the planning and holding of future events, courses or initiatives;
d) diffusion of your testimony and/or photographic, video or audio reproductions (also by means of adaptations) concerning you for publication on institutional internet sites, social networks and more generally on AISM and FISM communication material (e.g. journalistic information channels, television and printed paper).
The conferment of data for the purposes of letters a) and b) is necessary for the execution and provision of the service. The provision of data for the purposes referred to in letters c) and d) is optional and is based on your express consent.
If you apply to work with us
Your personal data are processed for the selection and evaluation of personnel for the purposes of a possible activation of a working relationship or collaboration with AISM and its Foundation. The processing of your data is based on the relationship established with the person concerned and, as far as the so-called “particular” data is concerned (i.e. able to reveal racial and ethnic origin, religious beliefs, political opinions, membership of political parties, trade unions, etc. as well as your health status such as, for example, membership of protected categories) the processing is based on your explicit consent. In this regard, if not strictly necessary, we ask you not to provide this type of information. Finally, we remind you that the provision of your personal data for the above purposes is optional, but necessary in order to properly evaluate your application.
Obligation or faculty to provide data and consequences of refusal
The user is free to provide personal data in order to request the services offered by AISM and FISM, but failure to provide such data may make it impossible to establish or continue the relationship with us or, more generally, to respond to his/her request.
Who processes your data
AISM and FISM put in first place and respect your Privacy, sharing information about you only in particular cases and ensuring that the treatment takes place with the utmost respect for your privacy.
In this regard, AISM and its Foundation provide information concerning you to other subjects (e.g. its suppliers) only in the following circumstances
– For purposes connected to the provision of services requested by you, the data may be made available to third parties, who will act asExternal data processors providing services instrumental to fulfilling your request (e.g. delivery service of SM Italia magazine, or membership card) or to whom the communication of data is necessary to comply with laws or regulations;
– in order to provide certain aspects of our services, for example to send mailing lists or to facilitate our users in making credit card payments, we rely on suppliers, consultants, collaborators, etc.. In this case we verify that our partners and suppliers always ensure the best standards in terms of security and confidentiality;
– to comply with any applicable laws, regulations, legal process or requests from public authorities;
– to detect, prevent or resolve fraud, security or technical issues;
– to safeguard the rights, property or safety of our users or of AISM and FISM.
In relation to the aforementioned purposes, the processing of personal data is carried out through manual, computerized and telematic tools with logic strictly related to the purposes and, in any case, in such a way as to ensure the security and confidentiality of the data, in addition to compliance with specific legal obligations.
Finally, we remind you that your personal data will never be disclosed without your consent. However, by choosing to participate in the public activities of the site, such as, for example, the publication of comments on the community or a story on the blog, any information you submit may be read, acquired or used by third parties. Please exercise caution when disclosing any personal information as part of these activities.
Transfer of personal data outside the EU
Your data may also be transferred to countries within the European Union, International Organizations that pursue similar missions or to other countries that the European Commission declares guarantee an adequate level of protection or with which AISM and FISM or their suppliers have signed contractual agreements with model clauses provided by the Commission or that in any case adopt the standards provided for by the regulations on data processing.
Duration of processing
Your personal data will be kept for the period of time necessary with respect to the purposes indicated in this informative report as well as in fulfillment of fiscal, accounting, administrative needs, to document our activity, to assert a right in a judicial forum and to respond to your data recovery needs.
What are my rights
You can exercise at any time the rights under Articles 15-22 of EU Regulation 679/2016 and request:
– the updating, rectification, integration, cancellation, transformation into anonymous form, blocking of data processed in violation of the law, including those no longer necessary for the pursuit of the purposes for which they were collected;
– have information about the
logic, methods and purposes of processing;
– receive the data in a structured, commonly used and machine-readable format;
– revoke any consent given with regard to the processing of your data at any time and oppose in whole or in part, the use of data;
– to lodge a complaint with the Guarantor Authority for Privacy, based in Rome (Italy), Piazza Venezia n. 11, cap. 00187 at the addresswww.garanteprivacy.it,
as well as to exercise the other rights recognized by the regulations in force.How can I exercise my rights
In order to exercise the above-mentioned rights, all you have to do is write to the AISM National Head Office and/or the FISM Head Office located in Genoa, Via Operai 40 – 16149 (GE) e-mail addressrichiesteprivacy@aism.it or, to the AISM and FISM Data Protection Manager respectively at the addressdpoaism@aism.it anddpofism@aism.it. In the case of data released exclusively in one of our territorial offices (Provincial Sections, Operational Groups or Regional Coordination), you can contact them directly (at the following link you can find all the references of our territorial offices:https://www.aism.it/strutture.aspx)
.Please note that before responding to your request, we may ask you to verify your identity and provide additional details. We will endeavour to respond within an appropriate period of time and, in any event, within the period of time required by law.
Child Protection
AISM and FISM do not allow minors to use their services (donations, newsletters, etc.) and, therefore, do not intentionally collect information about them. If we become aware that we have collected personal information from minors without demonstrable parental consent, we will delete such information from our databases as soon as possible.
If you believe that AISM and FISM may have accidentally collected information from a minor, please contact us at the references above in the “How can I exercise my rights” section.
Changes to the privacy policy
AISM and FISM may update this privacy policy at any time on their website, on its subdomains (e.g.: smuoviti.aism.it, sostenieci.aism.it) and on the blog “giovanioltrelasm.it”.
In the event that this privacy policy is modified, AISM and FISM will update the “Effective Date” and, if necessary, we will inform you of any material changes to the way we process personal information about you by posting a prominent notice on the site or by sending a notification to the email address you have provided to us.
In any event, we encourage you to consult this page for any updates and changes to our privacy policy.
Last updated September 10, 2020
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