about Nephkids

 

Welcome to Nephkids!  We are a group of concerned families, patients and
medical caregivers sharing information and experiences with the purpose of
helping children and adolescents with kidney disease.

We are open to adult family members, mature adolescent patients, physicians,
nurses and other members of the care team.  Watching over this group is Dr.
Susan Conley of
Philadelphia, a pediatric nephrologist with over 25 years of
experience in the field. Dr. Conley treats patients whose symptoms and
diagnoses span the entire spectrum of pediatric nephrology; her special
interests include nutrition in renal disease, and transplantation.

  Individual medical advice will not be given nor will specific physicians
be recommended.

Please communicate any thoughts or concerns you may have, that are
generated by this listserv, with your doctor. As a group, Nephkids
encourages patients and families to seek a second opinion from a
qualified physician if desired. Many group members have sought
second opinions, and almost all medical professionals provide them as
part of their practice. Group members are cautioned not to interpret any
information or opinions posted on Nephkids as a "second opinion." If a
second opinion is desired, it is best pursued via your current primary
doctor (or treating physician) and/or your health insurer.

  There is incredible expertise and experience among the members of this
group. We have an open membership policy, and happily welcome pediatric
nephrologists, pediatric nephrology nurses, and nutritionists to join our
wonderful group of experienced parents.  Our parents are able to
offer support "from someone who's been there", as well as cumulative
knowledge, words of wisdom, and countless helpful hints.

  This group was set up as a result of several events:  1) The National
Kidney Foundation's cyberNephrology initiative encourages the formation of
such groups, 2) Dr. Kim Solez of the University of Alberta in Edmonton,
Alberta, who runs an internet group for nephrologists, received requests for
a group such as this, and 3) interest has been brewing in the pediatric
nephrology community to try to help patients by promoting such a group.  We
therefore have the resources of the National Kidney Foundation, and the
computing center and Dr. Solez at the
University of Alberta behind us.

 We expect the group to evolve over time and would appreciate suggestions
for improvements.  Enjoy!



NEPHKIDS Etiquette rules:

Hello and welcome to the Nephkids group.
This is a note with some basic guidelines and etiquette for posting to the
group. If we all try to follow these it makes it much easier for our
wonderful medical professionals and all of us too.


1. When replying to a message please include only the part of the original
message that you are referring to, but please do include that so that people
can put your reply in context. This helps everyone follow
the flow of information better and decreases the amount of mail going
through the server. This also makes the messages easier to decipher for
those members who receive the digest version.

2. Use accurate subject lines. If the subject has changed from the original
subject then change the subject line. This is very important for our
medical professionals so they know when a question is
being asked or the subject is something for them to comment on. If you are
commenting on someone else's question, PLEASE change the subject line
otherwise the members might think it is a new question.

3. If you are posting a question to the doctors please include in the
subject line that it is a question for the doctors in some manner. If you
are replying to a question posed to the doctors, please change the subject
line so the doctors don't think it is another question for them.

4. Do not type message in all capital letters, as this denotes anger and is
akin to shouting.

5. Refer to the Nephkids welcome message at the end of this message for
information on subscribing and unsubscribing to the group, and obtaining
archives or other information.  If you lose this information, do not send an
email to the group address asking for help, send a private email to one of
the group volunteers.

6. Nephkids has a web site at the link below with lots of great information.
It is always growing and under construction so expect some typos.
http://cnserver0.nkf.med.ualberta.ca/nephkids/

7.
Remember this is a group for subscribers.  If you are at a different
address then the one subscribed, you cannot send mail to the group without
first subscribing using that address.  Messages from an unsubscribed address
will bounce to the list owners/volunteers.

8.  The group is very active, which is great, but at times the volume of
posts becomes overwhelming.  Think before sending to the whole group-is this
a good post for the group, or is it aimed at one person only?  Is the
content worth sending to the whole group? If it benefits only one member,
send it privately.

9.  On the other hand, be careful about sending private messages to any of
the professionals on the group. Your question may be one that others may
relate to and might benefit from the answer. Always remember that our
professional members cannot treat your child on-line.

10. If you are subscribed to another group and sending the same message to
that group, please send a separate message to Nephkids. Sending the message
to two different groups can sometimes cause mail problems for the list
owners/volunteers.

11. Do not forward or in any way use any member's posts without the author's
direct permission, and do not discuss specific health issues or other
private information of individual group members or their children with
people who are not on the list.

12. Please write in complete sentences.  Abbreviations and slang may be
difficult for some of us to understand.

13. Individual medical advice will not be given nor will specific physicians be recommended. Please do not email asking about specific physicians or medical centers.


If you have any questions please feel free to email any of the people below
for help and guidance. We were all new to the group once and know it is
sometimes hard to be the new kid on the block. We hope these guidelines will
help.

Erin Shirley <eshirley_5@yahoo.com>
Donna Connor daconnor@comcast.net




Discussion Group Disclaimer:

The information, opinions and advice contained on message boards, bulletin
boards, in text files, emails, chat rooms, or virtual auditoriums are not
intended to replace the services of a trained health professional or to be a
substitute for medical advice of physicians. The user should regularly
consult a physician in all matters relating to his or her health, and
particularly with respect to any symptoms that may require diagnosis or
medical attention.

The National Kidney Foundation makes no representations or warranties with
respect to any treatment, action, or application of medication or
preparation by any person following the information offered or provided
within or through the National Kidney Foundation, its website, or its
discussion groups.  Neither the NKF nor its partners, nor any of their
affiliates will be liable for any direct, indirect, consequential,
special, exemplary, or other damages arising there from.  All submissions
are subject to editing and modification based on the sole discretion of the
National Kidney Foundation.  The NKF is not obligated to review all
communications made on or through this website and is not responsible for
all information displayed through these forums.

By participating in this forum you agree to these terms.

TECHNICAL DETAILS (PLEASE SAVE THIS MESSAGE)!

To post to this list, send your email to:

  nephkids@mailman.srv.ualberta.ca

General information about the mailing list, including the archives is at:

  http://www.mailman.srv.ualberta.ca/mailman/listinfo/nephkids

If you ever want to unsubscribe or change your options (eg, switch to
or from digest mode, change your password, etc.), visit your
subscription page at:

http://www.mailman.srv.ualberta.ca/mailman/listinfo/nephkids


You can also make such adjustments via email by sending a message to:

  Nephkids-request@mailman.srv.ualberta.ca

with the word `help' in the subject or body (don't include the
quotes), and you will get back a message with instructions.

You must know your password to change your options (including changing
the password, itself) or to unsubscribe. 

Normally, Mailman will remind you of your mailman.srv.ualberta.ca
mailing list passwords once every month, although you can disable this
if you prefer.  This reminder will also include instructions on how to
unsubscribe or change your account options.  There is also a button on
your options page that will email your current password to you.