Advancing treatments for rare diseases together

Disclaimer & Privacy Notice

This website is provided by the EspeRare foundation. The information contained in this website is for general information purposes only. We make no warranties, representations or give any undertakings about any of the content of this website. The use of information obtained or downloaded from or through this website is at your own risk.
We are not responsible for any action taken by any person or organization, as a result of information contained in or accessed through this website. Information on this website is not intended as a substitute for informed medical advice. Patients must consult a qualified healthcare professional on any problem or matter which is covered by any information on this website before taking any decision.
 
Third-party websites and content
This website may contain third-party-owned content and hyperlinks to third-party-owned websites. We do not have any control over the content and availability of those sites. Therefore we do not accept any responsibility for such third-party websites or content, and we do not accept any liability arising out of any opinion contained on such third-party website or content.
 
Changes to this website
We reserve the right to change any part of this website at any time without notice. The EspeRare foundation will take no responsibility for and will not be liable for the website being temporarily unavailable due to technical issues beyond our control.
 
Copyright
The copyright in this website, including all documents, files, text, images, graphics, is owned by the EspeRare foundation or its third-party providers. The EspeRare Foundation logo and trademarks may not be used or reproduced without our prior written consent.
 

Data Privacy Notice

Please read the following information Carefully before using our Website
The EspeRare Foundation and its affiliates based in Switzerland (hereinafter “EspeRare”, “we”, “us”) are committed to protecting your privacy while pursuing our aim to promote research and development of new therapeutic solutions and, in general terms, to improve the medical treatment of patients suffering from rare incurable diseases.
EspeRare as the Data Controller, is responsible for the processing of any Personal Data you may submit on this Website.
The EspeRare Privacy Notice (hereinafter the “Privacy Notice”) is intended to provide you with the required information regarding the controlling/processing (collection, use, recording, storage or transfer) of any Personal Data that we may collect in relation to our activity and through any form of interaction.
 
This Privacy Notice aims to address the following questions:
  • - What is Personal Data and how we collect it?
    - How do we use your Personal Data, for which purpose?
    - How do we protect your Personal Data?
    - What legal basis do we have for processing your Personal Data?
    - When do we share your Personal Data and with whom?
    - For how long do we store your Personal Data?
    - What are your rights and how can you exercise them?
     
  • I. What is Personal Data and how we collect it ?
    “Personal Data” means personal information about you (as an identified or identifiable natural person) such as your name, birth date, email address or telephone number. Visiting this website does not require any form of registration. However we may collect your Personal Data when you, for example:
  • - Interact with us via email or telephone;
    - Use our “support” or “contact” forms.
  • II. How do we use your Personal date and for which purpose ?
    We may collect and use the Personal Data you provide via our Website to share with you information about our activities and program that we believe may be of interest to you.
    We may also collect and process information about your visit to this website to help improve the contents of the site and to compile aggregate statistics about people visiting our site.
III. How do we protect your Personal Data ?
We use appropriate technical, administrative and physical safeguards to protect the Data collected throughout this Website. We safeguard your Data against, for example: accidental loss, unauthorized access, use, destruction or disclosure.
Unfortunately, even if we strive to protect your Personal Data, we cannot guarantee the absolute security of the information you transmit to us over the internet.
 
IV. What legal basis do we have for processing your Personal Data ?
We will only process your Personal Data when the law allows us to, that is, only and to the extend we have a legal basis to do so.
Your Personal Data can be processed only to the extent one of the following legal provisions apply:
- You have given us your consent: direct or indirect, for example: to receive information, to be contacted through the “Contact us” form to make donations etc. You may withdraw this consent at any time;
  • - Processing is necessary to comply with legal or regulatory obligations, we are subject to;
    - Processing is necessary for the purpose of the legitimate interest that we pursue.
V. When do we share your Personal Data and with whom ?
We may only share your Personal Data within EspeRare and to pursue our legitimate interests.
We may from time to time share your Personal Data with Third Parties such as service providers who support our activities.
We expect and ensure that all these Third Parties provide necessary guaranties of confidentiality and security and take appropriate organizational and technical measures in compliance with the applicable data protection laws. Those service providers may only process the Personal Data we share with them according to and within the limits of our instructions.
If the Service providers are located outside Switzerland or the EU, the transfer of Personal Data shall only be executed if there is in force an adequacy decision or any other program such as the Privacy Shield Frameworks, for the country concerned.
 
VI. For how long do we store your Personal Data ?

Unless required by law or security reasons for another time period, we will store or otherwise process your Personal Data only for as long as necessary to fulfill the purpose for which it was collected and so far as you do not withdraw your consent for its processing nor exercise your right to be forgotten (see section VII below), before the expiration of any of these time periods.

VII. What are your rights and how can you exercise them ?
  • - The right of access: you have the right to know what Personal Data have been collected about you and how it has been processed;
    - The right to rectification: you have the right to obtain changes to inaccurate Personal Data;
    - The Right to erasure (right to be forgotten): you have the right to obtain the erasure of your Personal Data, under certain conditions, particularly when you no longer consent to the Processing of your Personal Data;
    - The right to restrict Processing: you have the right to obtain restriction in the Processing of your Personal Data, i.e. limit the way we use your Personal Data (this can be an alternative to the right to erasure (to be forgotten));
    - The right to be informed: you have the right to obtain any and all information regarding your Personal Data such as rectification, restriction or erasure;
    - The right to Data Portability: you have the right to transmit (or ask to transmit) your Personal Data to another Data Controller;
    - The right in relation to automated decision making or profiling: you have the right not to be subject to a decision based solely on automated processing, including profiling;
    - The right to object: you have the right to object: you have the right to object on grounds relating to your particular situation, to the processing of your Personal Data;

    - The right to lodge a complaint: you have the right to lodge a complaint with the local supervisory authority, without prejudice to any other remedy, if you consider any breach in the processing of your Personal Data.

  • Please be aware that these rights may be subject to exceptions and limitations.
    If you wish to address any request concerning your Personal Data, please contact: 
Data Protection Office Coordinator:
Attn. Mrs Sarah Delacoste, Mrs Monique Caillat
Phone: +41 (0) 79 816 49 83
Email: dpo@esperare.org