Last update: April 2019
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
The virtual get-together - the permanent
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 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.
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
- 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
- In order to point to the character of certain postings, please
use the following abbreviations at the beginning of your subject
*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 - just
do contact me personally at firstname.lastname@example.org.
- 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
Please do not use MIME in the header of your emails (e.g. in the
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 https://lists.franken.de/lists/suboptions/metab-l.
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 https://lists.franken.de/lists/review/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
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 :-)
DO SUPPORT YOUR LOCAL LISTOWNER !
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
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
for a donation . :-)
have fun with Metab-l and contribute!
||Erlangen, Germany, October
1995 - Deggendorf, April 2019
Metab-L is kindly supported by Nutricia
Metabolics, Nutricia GmbH, Germany.
© 1995-2019 Christian Renner (email@example.com)