How to become an Endo-ERN patient representative

Prerequisites for an Endo-ERN patient representative:

  • Representation, with a clear mandate, of a national patient organisation for a (cluster of) rare endocrine condition(s), as specified in one of the Main Thematic Groups.
  • Good understanding of the English language, sufficient for adequate discussions and communication.
  • Experience/specific expertise from the patient’s perspective in rare endocrine conditions and/or one of the Work-Packages themes.
  • A clear awareness on time needed and available to spend on Endo-ERN specific activities with periodical feedback to the patient organisation represented.
  • A few years of experience in running of, supporting of, and participating in a patient support group.
  • The patient group should explicitly guarantee the continuum of the representation,the follow up, and dissemination.

Recommended for an Endo-ERN patient representative:

  • The patient group should be registered in the normal legers, tax (exemption) registered, and have a public accessible website.
  • The patient group should publish an annual report of its activities and its finances.

EURORDIS:

EURORDIS has played a crucial role in the development of ERNs through the EU directive on cross-border health care, and has established a European Patient Advocacy Group (ePAG) for each ERN disease grouping. EURORDIS has also implemented an ePAG leadership capacity-building programme, which empowers ePAG patient representatives with the knowledge and skills they need to be able to effectively participate in ERN activities. Therefore, EURORDIS membership is strongly advised for Endo-ERN ePAG representatives.

Application procedure:

    • Expression of interest – including motivational letter, CV and endorsement letter of your national patient organisation and completion of the application form
    • Discussion of the candidate by the Chairs of Endo-ERN and the presently available Endo-ERN ePAG representatives (at periodical meetings)
    • Acceptance by a majority of relevant stakeholders

This short guide can help you to decide whether to apply

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Endo-ERN

Endo-ERN Privacy Policy

Endo-ERN is committed to user’s privacy and does not track personal data when visiting our website. We act in accordance with Regulation 2016/679 of the European Parliament and of the Council.

‘Personal data’ means any information relating to an identified or identifiable natural person. An identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as:

  • a name
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  • location data
  • an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person

Cookies

Endo-ERN only tracks anonymised data for statistical purposes. We do this via analytical cookies, placed through an anonymous IP Google analytics tag. The purpose of these cookies are to track the efficiency and success of the website.

These cookies do not store any personal data that can be linked to a natural person, but may save data such as inter alia, data about the website from which a person has come (the so-called referrer), which sub-pages were visited, or how often and for what duration a sub-page was viewed. The data collected through this is general data only, and cannot be traced back to one person.

It is possible to prevent the setting of cookies, by means of a setting of the Internet browser used. On top of that, already set cookies may be deleted at any time via an Internet browser or other software programs. This is possible in all popular Internet browsers.

Google Analytics does not share any data with third parties.

The principles of data protection do not apply to anonymous information and because these cookies minimally impact the privacy of the user, it is not necessary to ask for permission to use these cookies.

Newsletter

You may always unsubscribe from our newsletter at any time through the unsubscribe button located in our newsletter. Endo-ERN is both the controller and responsible for processing of any data regarding the newsletter. Endo-ERN does not make use of a third party for the Newsletter service.

E-services

Endo-ERN has a contact form, which activates your email software and allows you to send a comment or question to a general email address. When you send such a message, your personal data is collected only to the extent necessary to reply. If the team responsible for the mailbox is unable to answer your question, or your questions has regards to another party, it might forward your email to another service.

If you have any questions about the processing of your email and related personal data, do not hesitate to include them in your message.

The collected personal data and all information related to the above mentioned consultation is stored on the email server of the Endo-ERN Coordinating office and potentially those who have been concerned in the correspondence in order to respond to your comment.

Newsletter Tracking

The Endo-ERN newsletter makes use of tracking in order to be able to conduct a statistical analysis of the success or failure of online marketing campaigns. Endo-ERN may see if an email containing a newsletter was opened by a user, when it was opened, and which links were opened. 
The data collected through this tracking is generated and stored by Endo-ERN and is not shared with third parties, but may be used to adapt future content of newsletters in order to better meet the interests of our subscribers.

Contact details

For any questions regarding our privacy policy, please contact the Endo-ERN coordinating office.

You have the right to be forgotten and removed completely from the Endo-ERN contact database. To request this, please contact the Endo-ERN coordinating office.

Endo-ERN Coordinating Center, Meibergdreef 9, 1105 AZ  AMSTERDAM. The Netherlands

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