A discussion list is a group of people who discuss, by email, a subject which interests them, in our case, Alström syndrome. Imagine two people corresponding by email about their problems, their experiences, their fears, their lives. The Alström syndrome list is a bit like that, except that the dialogue is transformed into "polylogue," because it is no longer two people writing to one another, but a whole group of people.
A message posted by one of the subscribers (child or adult patient, family, friends) is received by all the other subscribers, and each can answer it, either personally or openly on the list (which is generally done the most often); imagine the wealth of exchanges!
All the more so because this means of communication, which is presented by Eurordis and hosted by the Medicalistes association, differs from other discussion forums in two essential ways:
Whereas it is necessary to be connected to a forum to read the messages and, if desired, to take part in the discussions, it is enough to send an email to the address of a discussion list for it to be delivered to all the subscribed members.
Messages on forums can generally be read by all net surfers, as well as indexed by search engines. Messages posted to the lists are accessible only by the subscribers.
Suscribing to the Alström syndrome list is, of course, free and commits you to nothing, and is done privately insofar as only an email address is needed at the time of subscription. Lastly, you can remove yourself from the list at any time.
The guidelines and etiquette to respect are those of Netiquette.
Safety and confidentiality of messages
The email addresses of subscribers: Only the list administrators know the addresses; they are kept secret.
Contents of the messages: They are accessible only to the list subscribers. Access to list archives is available only to subscribers by password. It is this obligatory password which prevents Internet search functions, like the engines, to access the text of the messages.
For whom is this list intended ?
This list is reserved for people affected, directly or indirectly, by Alström syndrome meaning patients, obviously, their family, their close relations.
If the administrators decide to do so, the list could be offered to others at a later stage.
The exchanges are held while respecting others, who can be very different (age, situation) and fragile, too, and while avoiding at all costs “playing doctor”: the consequences could be so serious !
What do people talk about there ?
Alström Syndrome can affect many organs in the body and it is very important that people can spot early signs. Discussions with other people living with Alström Syndrome may help people to identify specific problems they themselves may be having. Other topics of discussions may be leisure activities, education and healthy eating as diet is very important for a person with Alström Syndrome. People may just want to discuss their lives in general as living with such a rare and complex condition can often lead to depression.
The main goal of the Alström syndrom discussion list is to bring, through the personal experiences of each subscriber, information and support for the patients and their family. You should not hesitate to ask any question that comes to your mind. And if you are able to do so, do not hesitate to answer.
What language is used for the messages ?
The list being European, English will be the main language used in the messages, so that they are understood by the greatest number of subscribers.
If it is difficult or impossible for you to express yourself in English, you can write in your native language. In this case, also write the subject of the message in your native language. The subscribers who understand your language will immediately identify it and thus may be able to answer it.
Why was the Alström syndrome list created ?
Eurordis is an alliance of patients’ organisations dedicated to improving the quality of life of all people living with rare diseases in Europe. Its mission also consists in improving access to information and giving support to patients and their loved ones.
Discussion lists offer a very special space of communication and exchange, thanks to the personal experiences of each subscriber. The way they operate, which induces a great interactivity through direct distribution of messages by email, allows the questions, concerns, and hopes of patients and parents in the same situation to be shared in a quick and friendly fashion.
Eurordis offers this new service which, we hope, will allow Eurordis to become a movement formed of people, beyond a movement formed of associations.
Alström Syndrome is a very rare recessively inherited genetic disorder. Individuals and families affected by Alström Syndrome often feel quite isolated as the condition is so rare. People often do not get the chance to speak to others who are experiencing similar problems. Hopefully, having the list will enable people to discuss any issues they may have and also build up new friendships. People will also be able to share any new information developed about the condition.
This list will also allow patients with Alström syndrome who are not members of any association to join this space dedicated to communication, information, and support.
List ownership - Message ownership
The editor and the duly mandated list-owners own the lists. However the content of each message belongs to its initial author.
Any query to access archived data must not be made to the list users directly, but it should be firslty proposed to the list owner. The list owner decides whether or not to authorise access. This decision can follow consultation with the list users or not. In all cases the list owner will inform the list users of his/her decision.
In case the list owner and the list users would disagree, then the editor decides.
List users who wish to deny access to messages where they are mentionned or of which they are the authors can do so.
Tell others about the Alström syndrome list !
Now that you are familiar with the list, you well understand that the greater the number of subscribers, the greater the possibilities of finding given information; this is why it is important, in as much as you can, of course, to talk about the Alström syndrome list to your doctors, any ill friends you may have, and, if you are a general practitioner, paediatrician, or nurse, with your colleagues. A simple and effective way could be to print this message, make photocopies of it, and leave them with your specialist (or your hospital or clinic), who can, in turn, offer it to other patients likely to be interested by the Alström syndrome list.
Important note
Any message posted to one of the Médicalistes “General Public” lists can only be for information purposes, and in no case is to be taken as a medical opinion. Any information relative to therapy or diagnosis must be received with caution; only your doctor is able to confirm the validity of such information.
The Alström syndrome 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, whether or not members of Eurordis, 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 Alström syndrome, 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 is a discussion list ?