Hello statman,
How kind of you to look out for your sister and niece! Most
forums/message boards/support groups encompass urinary disorders in
general. I have found several that have specific urinary reflux
threads, but most are somewhat broad in scope. Many boards, however,
allow members to add topics, which your sister could do, perhaps to
the gratitude of others. One warning, you may want to remind your
sister not to post her e-mail address publicly, unless she has a
separate account for mail such as this, to avoid spam. Of course she
will have to provide it in most cases, to join, but it is not posted
for spammers to see.
AIPPG?Posting is allowed without signing up.
http://www.aippg.net/forum/viewtopic.php?t=8880
NephroQuest
http://65.57.249.23/ubb/Forum2/HTML/000069.html
Sign up for free here:
http://nephron.com/cgi-bin/Ultimate.cgi?action=agree
Belly Belly
http://bellybelly.com.au/forums/post-2407.html
Register for free here:
http://bellybelly.com.au/forums/profile.php?mode=register&PHPSESSID=03fff9dba80e9f229a665332585afa0c
NephKinds Cyber Support Group.
http://www.aakp.org/AAKP/RenalifeArt/2003/parentsupport.htm
Commands to subscribe, unsubscribe, obtain archives, or the subscriber
list should be sent to majordomo@ualberta.ca
To unsubscribe send the command:
unsubscribe nephkids-digest
To subscribe to the regular form of nephkids send this command:
subscribe nephkids
Once you are subscribed the address to send messages to the group is:
nephkids@majordomo.srv.ualberta.ca
http://cnserver0.nkf.med.ualberta.ca/nephkids/
This Keep Kids Healthy forum site seems to be quite active.
Scroll to ?Wish List?, under ?Special Topics?
http://www.keepkidshealthy.com/ubbthreads/ubbthreads.php
Pediatric Urology
Question Forum
http://www.medhelp.org/HealthTopics/Pediatric_Urology.html
http://www.medhelp.org/forums/Urology/wwwboard.html
Mothering Dot
http://www.mothering.com/discussions/showthread.php?t=229543
DaVita
http://www.davita.com/bbs/showthread.php?t=322&goto=nextnewest
MUMS is a National Parent to Parent Network whose mission is to help
parents who have a child with any disorder, medical condition, mental
or emotional disorder or rare diagnosis make connections with other
parents whose children have the same or similar condition. If possible
matches are made according to age, geographical location, gender, and
severity of the symptoms.
MUMS: National Parent to Parent Network
Julie J. Gordon
150 Custer Court
Green Bay, Wisconsin 54301-1243
1-877-336-5333 (Parents only please)
920-336-5333
1-920-339-0995 (fax)
E-mail: mums@netnet.net
Web: http://www.netnet.net/mums/
http://www.netnet.net/mums/matchq.htm
The MUMS application form is found here:
http://www.netnet.net/mums/howtjoin.htm
This Yahoo support group for rare diseases is not very active, but
your sister may make a connection here. If she already has a Yahoo
account, she can sign in on this page. Otherwise, should she decide to
join, she?ll need to open a free Yahoo account.
http://groups.yahoo.com/group/rarediseases-washington/
I don?t see your niece?s condition on this forum, but your sister
could add the topic of Urinary Reflux, and by doing so, she may
attract other parents.
http://www.healingwell.com/community/
There is a Urology thread on this forum
http://www.healthboards.com/boards/index.php
Support group for urinary disorders
http://brain.hastypastry.net/forums/forumdisplay.php?f=262
http://neuro-mancer.mgh.harvard.edu/ubb/Forum97/HTML/000088.html
This forum seems warm and friendly, although not specific to urinary diseases
http://www.parent-2-parent.com/forum/showthread.php?p=108493#post108493
Kidney and Urinary Tract Forums
http://www.mdadvice.com/cgi-bin/forumdisplay.cgi?action=topics&forum=+Other+Kidney+and+Urinary+Tract++Diseases&number=107&DaysPrune=1000&LastLogin=
The American Association of Kidney Patients will be sponsoring a
program in Seattle, date still unknown.
http://www.aakp.org/AAKP/fys.htm
I would call this group,TRIO Cascade, to see if this group pertains to
your niece?s disorder. It seems a bit non-descript. If not, they may
be able to direct you to a local support group that is relevant.
Trio Cascade
815 NW 120th St.
Seattle WA 98117
Irwin Etter, 206-364-0813
Open to All
Additionally, you can locate hospitals that sponsor support groups in
your sister?s city, by selecting local hospitals on this site. Call
them for support group meetings.
http://www.hospitalsoup.com/rn/asp/StateID.48/pt/HospitalListings.htm
=======================================================================
Additional Information on Urinary Reflux (Vesicoureteral reflux or VUR)
=======================================================================
Urology Channel
http://www.urologychannel.com/pediatric/vur.shtml
Sign up for a newsletter
http://www.kidney.org/
http://www.kidney.org/patients/live.cfm
Another newsletter from the American Association of Kidney Patients
http://www.aakp.org/AAKP/kbten.htm
Pediatric Urinary Tract Infection and Reflux
http://www.aafp.org/afp/990315ap/1472.html
http://www.baptisthealth.net/greystone/content.jsp?pageid=P01498
http://www.keepkidshealthy.com/welcome/conditions/vesicoureteral_reflux.html
From NIDDK. These very informative pages are chock full of urinary
reflux.resources.
http://kidney.niddk.nih.gov/kudiseases/pubs/vesicoureteralreflux/index.htm
http://kidney.niddk.nih.gov/kudiseases/pubs/childkidneydiseases/index.htm
http://kidney.niddk.nih.gov/resources/index.htm
Scroll down the page to ?Patient Travel? . Here are links to useful
sites that help parents that need to travel to seek help for their
children:
http://www.kumc.edu/gec/support/grouporg.html#specific
I hope your sister finds some comfort in one or more of the above
groups, and I wish you and your family all the best.
Regards,
crabcakes
Search Terms
Washington state + pediatric nephrology + support groups ? DC ?D.C
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Pediatric urinary reflux + support groups
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