Last update: January 2016

[Metab-L]

This is an electronic mailing-list for professional discussion on
inborn errors of metabolism - genetics, diagnosis, biochemistry, treatment, prognosis...

Metab-l  is meant to provide an informal and friendly, but also professional forum for meeting each other....for getting acquainted, for exchanging information  and addresses :), for planning projects, for discussing cases, problems, solutions, ideas.
It is meant as a meeting- place, a ROUND TABLE for clinicians with care of patients with inborn errors of metabolism, for biochemists, molecular biologists, for all kinds of  scientists and researchers in the field of Inborn Errors of Metabolism.

 The virtual get-together - the permanent get-together.

Knights of the Round Table


Thanks for joining and for contributing. I do hope and I do trust that we all of us, our daily work, our scientific endeavours, our clinical care, our laboratory  investigations, will profit from sharing and communicating - PLEASE BY ALL MEANS DO READ THE  FAQ-PAGE !.

THE "RULEZ AND CONVENTIONS" of Metab-L

  1. Metab-l  is intended as a quick and informal tool of communication between colleagues interested in Inborn Errors of Metabolism. Each of us should be allowed to touch any subject he/she wants to discuss.

  2. No censoring/moderating/peer reviewing is made in metab-l.
    We do care about quality, though: this depends totally on your activity and contribution to the list. Please do not complain about postings you think out-of-place - just contribute positively and thereby set the tone and quality of the list.
    Quality cannot be ordered or organized - it individually depends on each and every participant.
     
  3. Metab-l  is a tool for communication between colleagues. That includes anyone professionally or scientifically interested in Inborn Errors of Metabolism:

  4. Parents/patients i.e. laymen at this stage can and may not participate in the Metab-L list.
    This is not meant in a discriminatory way, just to prevent a flooding of the list and to guarantee data-security.
     
  5. IMPORTANT: Confidentiality and professional discretion: please remember that Metab-L postings are transported over the Internet and end up in email folders on server computers that very often neither you nor the admins of Metab-L can control. Please keep issues of ethically and legally required professional discretion in mind both when posting to the Metab-L mailing list and when dealing with Metab-L postings you receive in your email folder (especially when you are using non-university or non-hospital email addresses like gmail or yahoo). The following confidentiality note and legal disclaimer applies to all postings distributed via the Metab-L mailing list:

  6. CONFIDENTIALITY NOTICE AND LEGAL DISCLAIMER: Metab-L mailing list postings may contain confidential information and are intended only for the use of the intended recipients, i.e. professionals in the field of inborn errors of metabolism who are subscribed to the Metab-L mailing list in the interest of their respective professional work. Subscribers to Metab-L are required to keep to all relevant national and international standards, laws and regulations of medical confidentiality and medical professional discretion. UNintended recipients of Metab-L postings are hereby notified that any disclosure, copying distribution or the taking of any action in reliance on the contents of information provided by the Metab-L mailing list is strictly prohibited. Metab-L administrators and the listowner accept no liability for any breach in medial professional discretion or any other damage caused by  transmission or reception of  Metab-L postings. Any pesonal, business, and especially patient data given are given voluntarily and under the sole responsibility of the author of the respective posting - and may not be used at all by UNintended recipients. We also point out that in posting to the Metab-L mailing list or reading or using Metab-L postings all aspects of national or international Copyright laws and regulations have to be respected - especially please do not post copyrighted material unless you are authorized to do so and please take into consideration that everyone contributing to Metab-L "owns his/her own words": posters to the Metab-L mailing list are solely responsible for their own postings and a reproduction of any contribution to Metab-L in any medium outside of Metab-L without permission of the respective author may be both illegal and challenged by the author - and is strongly disencouraged. Additionally among others  Metab-L owners and the list admin definitely reserve  the right not to be responsible for the topicality, correctness, completeness or quality of the information provided and distributed by the Metab-L mailing list or this website.  Liability claims regarding any kind of damage caused by the use or abuse of any information provided, including any kind of information which is incomplete or incorrect, will therefore be rejected.
    Metab-L owners and the list admin are not responsible for any contents of emails distributed by Metab-L nor for Metab-L emails being distributed to others than the intended recipients - unless we have full knowledge of illegal contents or distribution paths and would be able to interfere.
    This notice and disclaimer is to be regarded as an integral part of both the whole Metab-L website, the Metab-L mailing list archives and each and every Metab-L posting past, present and future.

  7. In order to make the list easier to handle for those colleagues with little time who are nevertheless ready to participate, please choose your subject-lines as carefully as possible. Not every posting has to be read by all participants - please give them a choice by making your subject-line informative.
  8.  
  9. In order to point to the character of certain postings, please use the following abbreviations at the beginning of your subject line:
  10. *A*: Address requests and answers (see 5)

    *C*: Case discussions

    *G*: Certainly of general Interest

    *J*: Job opportunity

    *S*: Social posting :)

    All other postings are without abbreviation, so far. If need be, we can agree on adding or deleting or changing some of them. If possible, make them appear "bold" or "fat". 

  11. Address requests: Why not? In order to avoid redundancy please send your replies not to the list but directly to the colleague demanding the address (do not use the reply button).

  12. As for the originator of the request: please post the correct answer you received *once* to the list, for all colleagues  to profit - this should be considered a "moral obligation".
     
  13. Please do not have structural discussions on Metab-L
  14. This needs to be explained: I personally think, we will need a lot of discussion about how metab-l should look and work, about how the different mailing-lists can cooperate or be brought together, about how the Inborn Error Network should look and work and be structured in the nearer future, about tiny details and big changes. metab-l is a project in its beta phase and should and must develop and become our joint project, and if not metab-l, at least Inborn Error Communication as a whole. I personally think we all of us should contribute to that discussion. But to cater for the interests of those who complained about that kind of mails let us keep away that kind of discussion from metab-l - just do contact me personally at cjrenner@well.com.

  15. Please do not use "attachments", MIME, non-text-files, binary files (e.g. WORD-files) in your postings to Metab-L.

  16. Metab-L can only handle simple text messages, no binary file attachments.
    Please do not use MIME in the header of your emails (e.g. in the subject line).
    MIME is an enhanced charset that is not supported by all email programs nor by our Metab-L software and WWW-interface: strange charactres in metab-l postings or in our permament archive result from the use of MIME. MIME can be tunred off in any mailing program - please consult your individual help-files or manuals.
     
  17. For list members only  Metab-l is also accessible via the World-Wide -Web. Postings can be sorted by thread, date or author. You can email the authors directly from the web-page. Author information is wrong, when -for some reason - the orginial posting was not directly accepted by the list-software and had to be transferred to the list manually - by me (hence the many C.Renner- or cnrenner -postings - most of them are "forwards" of other participants` messages).
  18.  
  19. You may want to further configure your Metab-L account, e.g. change your password or have it sent to you when you forgot it or have not received one yet. This is especially important when you want to access the Metab-L WWW-archives (see above).  Please do this via the WWW at http://lists.franken.de/mailman/options/metab-l/your_email_address. This URL is the right place for other modifications, as well, e.g. when you want to temporarily set your account to "no-mail" when you go on vacation (see below). Please check out this URL, will you?
  20.  
  21. To see a list of other metab-l-members (password-protected) please go to https://www.franken.de/lists/review/metab-l
  22.  
  23. In replying to messages on Metab-L please usually do this to the mailing list as whole by just hitting the reply button of your email program.

    There might be occasions, though, when your answer to a metab-l posting is just relevant for the colleague who posted the message (e.g. a "yes, please send that info to me" - message).
    In these cases please be careful and just send your message to the intended recipient so as to keep "noise" on Metab-L as low as possible. Every email program allows this choice.

  24. Vacation programs - automatic messages that are turned on for your email program when you are away to tell just that as a reply to all messages you get.
  25. Vacation programs can be very helpful - but disastrous when you are participating in a mailing list like Metab-L.
    In the past we have had some email loops on the mailing list. They were due to "vacation" programs: automatic responses are sent back to the mailing list, be distributed again to ALL members, are automatically answered again by the vacation program and so on; giant loops arise cluttering the mailboxes of all participants with hundreds and hundreds of automatic "I am away"- emails We do our best to prevent email loops - this is why the server software is so picky about the email addresses and allows postings only from exactly the email address subscribed. Fact is we would have many many email loops if this feature was not enabled, as lots of metab-l members seem to use "vacation" programs.  Most vacation programs are - at least - so configured that the email response they generate does not come from exactly the email address the sender usually uses - and can so be detected and email loops prevented by the metab-l software. When vacation programs` output seems to come from exactly the vacationer` s email address the mailing list software is helpless, though.
    So please try NOT to use automatic vacation programs on your metab-l-email-account OR if you do need a vacation program after all and are not 100%-sure that the vacation program can be configured in a harmless way (see above) please be so kind as to disable your email reception from metab-l for the time of your absence. You can do this easily by going to http://lists.franken.de/mailman/options/metab-l/your-personal-email-address.
    On this same place you can easily reenable your metab-l-email-reception upon your homecoming.


  26. PLEASE DO READ THE FREQUENTLY-ANSWERED-QUESTIONS-PAGE AS WELL. NOW :-)

  27.  

PLEASE DO SUPPORT YOUR LOCAL LISTOWNER !

Nutricia Metabolics, Nutricia GmbH Germany are gratefully acknowledged for their longstanding and generous financial support of Metab-L.

Nevertheless, as  Metab-L really takes a lot of time (and a little money) to administrate regular financial donations by list members are of course gratefully acknowledged and stealthily encouraged (suggestion: 5 Euro per month or 50 Euros annually).

How to make donations:

a) Donations can easily be made from almost all countries by following the PayPal-Link below. Thank you very much in advance for supporting Metab-L.

 

b) For German donators it might be easier or more accustomed to directly donate to a checking bank account: Sparkasse Erlangen, account Dr. Christian Renner, account number 24123482, "Bankleitzahl" 76350000. Keyword: Metab-L.
 

c) If you like you might alternatively consider the listowner`s Amazon-book-wishlist for a donation . :-)


THANK YOU!

Links


Please have fun with Metab-l and contribute! Erlangen, Germany, October 1995 - Deggendorf, January 2017
smiling envelope ;-)
Christian Renner


Metab-L is kindly supported by Nutricia Metabolics, Nutricia GmbH, Germany.


1995-2017 Christian Renner (cjrenner@well.com)