A WORLD WITHOUT ME

IAFME International Alliance for Myalgic Encephalomyelitis

TERMS & CONDITIONS - PRIVACY POLICY

TERMS & CONDITIONS

The use of this web site constitutes agreement with the following terms and conditions:


The International Alliance for Myalgic Encephalomyelitis (IAFME) maintains this website (the “Site”) as a courtesy to those who may choose to access the Site (“Users”). The information presented herein is for informative purposes only. IAFME grants permission to Users to visit the Site and to download and copy the information, documents and materials (collectively, “Materials”) from the Site for the User’s personal, non-commercial use, without any right to resell or redistribute them or to compile or create derivative works therefrom, subject to the terms and conditions outlined below, and also subject to more specific restrictions that may apply to specific Material within this Site.


The International Alliance for Myalgic Encephalomyelitis (IAFME) administers this Site. All Material on this Site from the International Alliance for Myalgic Encephalomyelitis (IAFME) appears subject to the present Terms and 

Conditions.


Unless expressly stated otherwise, the findings, interpretations and conclusions expressed in the Materials on this Site do not necessarily represent the views of IAFME, its member organizations or partners.


DISCLAIMER NOTICE

While the International Alliance for Myalgic Encephalomyelitis (IAFME) endeavours to provide accurate material on its website, it gives no warranty concerning the accuracy of the material provided by this service. Users should refer to the originating bodies or sources of the documents for confirmation of the accuracy of the material.


The International Alliance for Myalgic Encephalomyelitis (IAFME) provides hypertext links to a number of external sites, but does not accept responsibility for material on these external sites.

The user of the link is responsible for the downloading of any linked material and/or any fees or charges incurred by the downloading of this material. Downloading of images and/or text without the permission of the copyright owner may breach international copyright laws.


The International Alliance for Myalgic Encephalomyelitis (IAFME) will have no responsibility or liability in relation to any loss or damage which you incur, including damage to your software or hardware, arising from your use of or access to this site.


GENERAL

The International Alliance for Myalgic Encephalomyelitis (IAFME) reserves its exclusive right in its sole discretion to alter, limit or discontinue the Site or any Materials in any respect. The International Alliance for Myalgic Encephalomyelitis (IAFME) shall have no obligation to take the needs of any User into consideration in connection therewith.


The International Alliance for Myalgic Encephalomyelitis (IAFME) reserves the right to deny in its sole discretion any user access to this Site or any portion thereof without notice.

No waiver by the International Alliance for Myalgic Encephalomyelitis (IAFME) of any provision of these Terms and Conditions shall be binding except as set forth in writing and signed by its duly authorised representative.

Unless otherwise noted, information on this site may be freely reproduced by IAFME member organisations, with credit given to this source. Others may request permission to use the material.


CONDITIONAL USE OF THIS SITE AND/OR APP:

Your access to and use of this website and/or app and its contents (the "Site") is subject to the terms and conditions of this Privacy Policy ("Privacy Policy" or "Policy"), and all applicable laws. By accessing and using this Site, you (the "User" or "you") accept and agree to these without any limitation or qualification.


TERMS OF USE:

Your use of this Site is also subject to the Terms and Conditions posted on this Site ("Terms and Conditions").


PRIVACY NOTICE

This Privacy Notice describes how your personal data is processed when you visit and use this website ("Site"). In this Privacy Notice, "we", "us" or "our" refers to IAFME International Alliance for Myalgic Encephalomyelitis as the operator and controller of the Site. 


IAFME International Alliance for Myalgic Encephalomyelitis

31-33 Avenue Giuseppe Motta,

1202 Geneva – Switzerland

+41 79 830 57 54


COLLECTION AND USE OF PERSONAL DATA

When accessing our Site, the following data is stored in log files: Your IP address, date and time of your access, browser request and general information about your operating system and browser. This usage data forms the basis for statistical, anonymous analysis in order to identify trends to further improve our Site and our offers accordingly and to enhance your experience when visiting our Site.

Most areas of our Site do not require any form of registration or the provision of specific personal data. You may need to provide limited personal data in order to receive certain information and services from us. If you provide personal data about other people - for example, your family or other authorised representatives, we rely on you to tell those people that you are giving their personal data to us and to make them aware of this Privacy Notice to the extent relevant.


For example, the following services require registration:


News subscription

You can sign up for news and updates by email where such service is provided on the Site. Only basic personal data, such as your name, address and email address are needed for registration.

For verification purposes, we will send you a confirmation email immediately after you have finished the registration process. During this process, we may also store your IP address and the date and time of registration. The personal data collected as part of your registration will be used for sending you our news and/or other updates.


Our newsletters contain tracking pixels which enable log file recording for statistical analysis of our newsletter campaigns. We may see whether and when an email was opened, and which links in the email were activated. We use GoDaddy.com, LLC as our email marketing service. We only store your email address for email marketing services.

You may opt out from receiving any, or all, of these communications from us by contacting us via info@iafme.org or by following the unsubscribe link or instructions in any email we send you. Please note that changes may not become effective immediately.


Contact form and emails

You may use a contact form (where provided) in order to ask questions about us or our products and services. When using the contact form, you will be asked to provide personal data such as your name and email address and a message you want to deliver to us. You may also contact us by writing to us directly via email where we have provided a specific email address. We may use such information to get in touch with you or to reply to your message.


Surveys

Occasionally, we conduct surveys via our Site or third party tools (such as SurveyMonkey). In addition to your opinion or feedback, you may be asked to provide personal data. The type of data collected depends on the survey; we will use the data only as indicated in the survey.


DISCLOSURE OF PERSONAL DATA

We may disclose your personal data to the following recipients and for the following purposes:

To our service providers; these service providers, sub-contractors and subsidiaries include providers of information technology, identity management, website hosting and management, data analysis, data back-up, security and storage services;

If you expressly request us to do so;

If the disclosure is necessary to comply with a court order or a legal or regulatory requirement; or

We may from time to time disclose contact information between members as part of our membership services to put them in touch with each other.

Our service providers may be located outside the country where a visitor is located. As a result, a visitor’s information may be transferred outside the country where they are located. All our service providers are contractually bound to process personal data only on our behalf and in accordance with our instructions. We also oblige them to comply with technical and organisational measures ensuring the protection and security of personal data. If a service provider is located in a country where the applicable laws do not provide an adequate level of protection for personal data, we will ensure by appropriate means that the respective data recipients maintain such adequate level of data protection.

The third parties will only use personal data for the agreed purpose and not sell it to third parties or market it otherwise.


SECURITY AND CONFIDENTIALITY

To ensure the security and confidentiality of personal data collected online, we use data networks protected, inter alia, by industry standard firewall and password protection. In the course of handling your personal data, we take measures reasonably designed to protect such data from loss, misuse, unauthorized access, disclosure, alteration or destruction.


SOCIAL PLUG-INS

Our Site contains links to the external social networks such as Facebook, Twitter, Instagram, YouTube and LinkedIn and you may share on social networks the content of our Site.

This Site uses a safe sharing tool which establishes a direct contact between the social networks and users only after users click on one of the respective buttons. This tool does not automatically transfer user data to the operators of such platforms. If users are logged into one or more of the social networks, the use of social buttons for Facebook, Twitter, etc. will display an information window in which the user can confirm the text before it is sent. The user can share the content of this Site on social networks without their providers creating profiles of users’ surfing behavior.


COOKIES

Cookies are text files placed on your device to help analyze how you use our Site. After the browser session, most of the cookies we use are deleted from your device (session cookies). Other cookies remain on your device (permanent cookies) and permit its recognition at your next visit to our Site. This allows us to better serve you with tailored information and to facilitate your on-going access to, and use of, the Site. If you are uncomfortable with the use of cookies, you can manage and control them through your browser, including removing cookies by deleting them from your 'browser history' (cache) when you leave the Site. Please note that deactivating cookies may affect your browsing experience.


GOOGLE ANALYTICS

This Site uses Google Analytics, a web analytics service provided by Google, Inc. (“Google”). Google Analytics uses cookies to help the Site analyse how users use the Site. The information generated by the cookie about your use of the Site will be transmitted to and stored by Google on servers in the United States and stored there. In case of activated IP anonymization on this Site, however, your IP address is previously truncated by Google within member states of the European Union or in other states which are party to the agreement on the European Economic Area. Only in exceptional cases is a full IP address transmitted to a Google server in the United States and truncated there. On our behalf, Google will use this information to evaluate your use of our Site, compile reports about Site activities, and provide us with further services related to Site and Internet usage. The IP address sent from your browser as part of Google Analytics is not merged with other data by Google. You can prevent storage of cookies by appropriately setting your browser software; in this case, however, please note that you might not be able to fully use all functions offered by our Site. In addition, you can prevent data generated by the cookie and relating to your use of our Site (including your IP address) from being collected and processed by Google, by downloading and installing a browser plug-in from the following link: http://tools.google.com/dlpage/gaoptout?hl=en (link is external).

This Site uses Google Analytics with the extension "anonymizeIP()"; IP addresses are therefore truncated before further processing in order to rule out direct associations to persons.


YOUR RIGHTS

We will delete the personal data collected about you if all processing purposes have been fulfilled unless statutory retention obligations apply.

You have the right to request access to, or transfer of, the personal data we process about you, to request correction of any incorrect personal data, restriction of access to, and deletion of, personal data, always to the extent these rights are granted by applicable. Furthermore, if you believe that your rights granted by applicable data protection laws have been infringed, you may lodge a complaint with the competent data protection authority.


For questions or queries please contact us at: info@iafme.org or write to: Alexandra Heumber Perry

IAFME

31-33 Avenue Giuseppe-Motta

1202 Geneva – Switzerland.


CHANGES TO THIS PRIVACY NOTICE

We keep our Privacy Notice under regular review and may change it at any time. Your continued use of our Site and of our products and services is deemed as your acceptance with any such changes. Changes to the Privacy Notice will be communicated appropriately.


Last update: 15.04.2019