Last update: February, 20th, 2010
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![[Metab-L]](metab-l.gif) |
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.
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 |
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
- 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.
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.
- Metab-l is a tool for communication between
colleagues. That
includes anyone professionally or scientifically
interested
in Inborn Errors of Metabolism:
Parents/patients i.e. laymen at this stage can not participate in
the Metab-L list.
I think this restriction does not apply to Dr.
Eaton`s list.
This is not meant in a discriminatory way, just to prevent a
flooding of the list and to guarantee data-security.
- 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:
- 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.
- 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.
- In order to point to the character of certain postings,
please
use the
following abbreviations at the beginning of your subject line:
*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".
- 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).
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".
- Please do not have structural discussions on Metab-L
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.
To achieve this there is the STRUCT-IEM BLOG - this is totally
dedicated
to that kind of discussion. To subscribe please send me an email to
cjrenner@well.com. please.
Please post any posting related to technical or tactical or
structural
questions of our communication to this list (after having subscribed :)
You are very welcome to the STRUCT-IEM
BLOG, although there is VERY LITTLE
TRAFFIC
on this weblog at the moment.
- Please do not use "attachments", MIME, non-text-files, binary
files
(e.g. WORD-files) in your postings to Metab-L.
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.
- 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).
- 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?
- To see a list of other metab-l-members (password-protected)
please go to http://lists.franken.de/mailman/listinfo/metab-l/
- 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.
- 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.
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.
- PLEASE DO READ THE
FREQUENTLY-ANSWERED-QUESTIONS-PAGE AS WELL. NOW :-)
PLEASE DO
SUPPORT YOUR LOCAL LISTOWNER !
Orphan Europe Germany and
Milupa GmbH
Germany are gratefully acknowledged for their longstanding
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 gratefully
acknowledged
and indeed heartily and earnestly 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, August 2010
|
Christian
Renner |
Metab-L is kindly supported by Orphan
Europe, Dietzenbach, Germany and
Milupa
GmbH, Friedrichdorf, Germany.
© 1995-2010 Christian Renner (cjrenner@well.com)