Eurordis represents hundreds of member organisations in 31 countries and more than 1.000 rare diseases. Timely information and communication with our members is at the heart of the success of our network. It is therefore important that our members are able to talk to each other and exchange ideas, news, methods and strategies for the rare disease patient community. This is the reason why this mailing list was created.
What can you talk about in the list ?
Anything! Feedback or questions about Eurordis’ activities, questions to other members, events, ideas, whatever you think may be of use to the European rare disease community.
The Eurordis Members list is private and advance subscription is required. The list is not moderated: the messages are not screened before their dissemination to subscribers, the system being based on trust between members.
But all the messages are re-examined by the list administrators after they are sent to the subscribers. These people contribute to the best possible quality of the exchanges and ensure compliance with the operating rules of the list (Netiquette).
These are the only subscribers to have access to the complete members list and they are held to secrecy. They make their decisions completely independently.
They intervene in situations such as:
Non-compliance with the usual rules for discussion lists
Message not respecting the list’s objective
Message with intent to advertise
Technical anomaly in the message which could impact its dissemination
Presentational anomaly in the message which could impede comprehension of its contents
and, in a broader sense, any unsuitable situation with respect to the list’s objective.
They can exclude any subscriber from the list who does not comply with the rules of correct operation of the list (Netiquette).
The list-owner can launch a new subject to keep the list active. Other subscribers, though, may also propose new discussion topics.
Enter your email address in the window that opens when you click on this link, then click on the button. Caution: The email address you use must be a valid address, because the server will send a vital code to this same address to validate your subscription.
Please check your mail box. Sympa will send you an automatic message with your password that you should copy (or simply copy and paste to avoid mistakes) in the web window that ’ll open up once you have entered your e-mail and clicked on . Once you’ve written or pasted your password, click on the button.
A new message (of welcome) is then sent to you confirming your subscription.
Caution: You should save or print out this message, because it contains information that is vital to your identification, and therefore indispensable for cancelling your subscription, accessing archives... These elements are:
your subscription email address
the corresponding password (the initial password is intentionally very complicated, but you can change it very easily).
From now on you can post your introductory message to the list to which you have just subscribed. A small note of introduction (optional), however brief, is desirable, in order to introduce yourself to the list subscribers; you can post this message by clicking here.
Introduce yourself as soon as you subscribe: send a message to the list to announce your arrival to the other subscribers, the connection you have with rare diseases, your first name (or your pseudonym), how you learned about the list and what led you to subscribe to it.
Read and respect the Netiquette. Read it at least once before posting a message to the list !
Write directly from this site
If you are already a list subscriber, you can write an email to the list directly from this site. Click here to identify yourself (the "Login" button on the top left of the page that will open), then click on "Post" in the menu on the left, to write your message.
There is also a space here to share documents and to allow your fellow list subscribers to download them; they can be documents relating to medicine (files, images, videos...), or any other type of document.
This is done because posting attachments is strictly prohibited on the list (risk of server overload or server blockage, virus transmission...).
It is unnecessary for you to save received messages. You have complete access to the archives with a search function using key words. However, they are, of course, protected, and only the list subscribers can consult them. You can perform a "simple" search for the current month, or click on "advanced search" and use several search criteria.
A minor point of clarification is necessary if using computers is still a bit of a mystery for you: when you perform an "advanced search," you should select the months of files in which you wish to make your search. In clicking on one month (for example, "2001-12", for December 2001), you will perform a search for this month only. To select several months, or even a longer period, click once on the month at the beginning of the period desired, move up to the month at the end of the period, while holding down the “Shift" key of your keyboard ("majuscule" in French, different from "Caps Lock"), and click on this month.
Caution: To avoid getting a message saying "Internal server error", avoid performing a search over too long a period or set of archives, and limit your search to 3 months if the list is *very* active, 6 months if it is not.
To access the list archives, you must first go to the page of this list, then click on the link "Archives" in the menu on the left. Caution, when you click on this link, a new window will open.... with an error message in red (except if you have already been identified). THIS IS NORMAL.
Don’t forget that each time you want to reach the Sympa interface, you will need to identify yourself by clicking on the “Login" button on the top left of the screen, and enter your email address and your personal password. If you have lost the latter, you can easily get it back.
First of all, a minor clarification: If you want to end your subscription because you’re receiving too many messages on one or more lists to which you have subscribed, or because you receive these messages on your professional email address, know that you can remain subscribed and consult the messages posted to the list on the web, without receiving them by email, which does not prevent you from being able to post messages to the list.
What can you talk about in the list ?