Hi again w2scj2003,
Considered an orphan or rare disease, NDI, particularly the
drug(lithium)induced form, there is not much in the way of support,
especially local to you, to be found. Since I could not find exactly
what you wanted, I am posting this as a comment. I am hoping that if
you contact one of these groups, they may lead you in the right
direction for finding some support. You correctly stated that many NDI
websites are no longer active. The links I am supplying were all
active today, but there *may* be broken links on pages.
The New Jersey Self Help Group Clearinghouse is the largest
organization I found, Northwest Covenant Medical Center, Denville, NJ
07834, Hours are 9:00am to 4:00pm, Monday through Friday. They focus
largely on mental health issues, but also list over 4,500 other groups
to “help one another deal with a specific illness, disability,
addiction, bereavement situation, parenting problem, caregiver
concern, abuse, victim, divorce, or other stressful life situation.
Just call our toll-fee helpline 1-800-367-6274, more easily remembered
as 1-800-FOR-M.A.S.H. “ The list is not made public, but you can order
a copy of over 4,500 support groups in New Jersey, visit this site.
The cost is $12.50. I would give them a call to see if there is a
group for you before ordering.
http://www.njgroups.org/
http://www.ochd.org/srg/healthservices.htm#njch
These two local support groups are not specific to NDI, but may have
members with this disorder, or know of another group:
Ocean Group at Community Medical Center
99 Highway 37 West, Toms River, NJ 08755
Contacts: Phone: 732-557-8076, Pam Lightfoot, ext. 11547, and Vicky
Hardy, ext. 10226
Meets the 3rd Tuesday of each month at 6 p.m.
Ocean and Monmouth Group at Office Plus at Ideal Plaza
2226 Hwy 9 South, Suite 21, Howell, NJ 07731
Contact: Olivia Williams, 732-408-9666
Meets the 2nd Wednesday of each month at 7 p.m
A faith-based support group
http://www.bianj.org/hwch_p-s_sup-groups.html#ocean
From the WebMD Health site:
“Support for families and professionals coping with
neurogenic/central, nephrogenic, gestagenic and dipsogenic/polydipsic
diabetes insipidus. Provides information and referrals, phone support,
and advocacy. Website includes articles (English, French and Spanish).
24 hr chatroom, message board. Newsletter.”
http://my.webmd.com/content/healthwise/92/23016.htm?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348}
E-MAIL: diabetesinsipidus@maxinter.net
WEBSITE: http://www.diabetesinsipidus.org/
Yahoo Groups Nephrogenic Diabetes Insipidus online gsupport group:
http://health.groups.yahoo.com/group/ndinetwork/
NIH/National Diabetes Information Clearinghouse (also included NDI)
1 Information Way
Bethesda MD 20892-3560
Phone #: 301-654-3327
800 #: 800-891-5388
e-mail: DDIC@info.niddk.nih.gov
Home page: http://www.niddk.nih.gov
Nephrogenic Diabetes Insipidus Network
2 Beechwood Heights
Columbus, GA 31904
Tel: (706)323-7576
Fax: (215)590-3705
Email: mom2awirlwynd@aol.com
Nephrogenic Diabetes Insipidus Foundation P.O. Box 1390
Eastsound WA 98245
Phone #: 360-376-6343
800 #: 888-376-6343
e-mail: info@ndif.org
Home page: www.ndif.org
From the Office of rare Diseases, this is a list of links for other
resources:
http://ord.aspensys.com/asp/resources/pat_supgrp.asp
Good luck to you!
Regards,
crabcakes-ga |
