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44 Support groups




Description

This article is from the Organ Transplant FAQ, by mike_holloway@hotmail.com (Michael Holloway) with numerous contributions by others.

44 Support groups

(see Part 3 for organizations offering financial assistance)

A.C.O.R.N. (Atlantic Canada Organ Recipient Network)
----------------------------------------------------
from Oran Mosher <oran@ra.isisnet.com>

The group currently consists of people who are from across Atlantic
Canada. A.C.O.R.N. holds meetings every other month and produces a
Newsletter three times a year. The Newsletter is called ACORN News. The
Newsletter is used as a communication tool to keep it's members informed on
various topics. The group promotes organ donor awareness, peer volunteer
support,
organizes social events and holds fundraisers to help with financial costs.
For more information about A.C.O.R.N. or to receive a personal copy
of ACORN News send your queries to any of the below addresses.
Mailing Address: A.C.O.R.N.
c/o V.G. Hospital
1278 Tower Rd.
Halifax, NS
B3H 2Y9 Canada

Voice Mail / Fax Machine: (902) 469-9769 - Voice
(902) 428-2042 - Fax

Biliary Atresia & Liver Transplant Network
------------------------------------------
Biliary Atresia & Liver Transplant Network Inc.
3835 Richmond Avenue, Box 190
Staten Island, NY 10312 USA
Telephone (718) 987-6200
Fax: (718) 987-6200
E-Mail: Livers4Kids@earthlink.net OR OrganTrans@msn.com
Web Site: http://www.asf.org/balt.html

Biliary Atresia & Liver Transplant Network
Dedicated to empowering the hearts and minds of children with liver
disease,
their families and the medical professionals, BALT is the largest pediatric
liver foundation worldwide and publishers of The Biliary Tree newsletter.
BALT
provides FREE educational information, support, and advocacy for all
pediatric
liver diseases (PRE- AND POST-LIVER TRANSPLANT) including Alagille's
Syndrome,
Alpha-1 Antitrypsin, Biliary Atresia, Byler's Syndrome, Galactosemina,
Gylcogen Storage Disease, Hepatitis, Tyrosinemia, Wilson's Disease and
pediatric liver transplantation.

WHAT BALT DOES
Baby Formula & Medical Supplies Network - This program has helped many
families throughout the U.S. to provide adequate nutrition for their
children
with liver disease.
Parent Matching - This program brings parents in the network together, which
often results in establishing strong support systems and special
friendships.
Support Team - The eight member team welcomes new families and provides
emotional support as these families start their journeys.
The Tree House Club - The Club allows children with liver disease, liver
transplant recipients and their siblings to share their feelings and cope
with
their fears by linking up with each other through a pen-pal network.
The Children's Corner - The Corner gives our kids a special page in each
issue
of The Biliary Tree where they can get creative. It's a chance for the kids
to share what's new and to tell their own stories.
BALT Library - The library holds information for all members on all areas of
pediatric liver disease, pediatric liver transplantation and organ donation.
And because the library is connected with a number of other organizations
worldwide, additional resources will continually become available to
members.
The Twin Registry - In hopes of getting to the core of why certain diseases
occur in our infants, the registry continues to register twins and triplets
with liver disease.
Educational Seminars - In conjunction with other organizations, BALT
conducts
educational seminars with the assistance of leading medical professionals .
On-Line Family Support Chats - Families with computer access can join BALT,
medical professionals and other families to discuss all aspects of pediatric
liver disease and transplantation. Schedules will be posted on our Web
site.
Transplant Center Referrals - BALT acts as liaisons between families and
pediatric liver transplant centers. We provide information about specific
transplant centers, resources available in the area and support from other
BALT families located near the transplant center.
Medical Advisory Board - To ensure the highest quality of medical
information
to our members, BALT has enlisted the assistance of the top medical
professionals in pediatric liver disease and transplantation.
Angels Above Us - Until a cure is found for liver disease and
transplantation
has been perfected, Angels Above Us will continue to serve as the
organization's bereavement support group. This group lends support to those
who are suffering by linking them with others in the network who have also
lost children.
Coalition on Transplantation - BALT serves as Co-Directors and Founding
Trustees of the American Share Coalition on Transplantation (ASCOT). BALT,
along with the American Share Foundation, The Nicholas Green Foundation and
The World Children's Transplant Fund have together formed a coalition of
groups dedicated to disseminating educational information about
transplantation and promoting organ donation. ASCOT's web site
(http://www.asf.org) is the Official Web Site for The 1997 International
Transplant Congresses.

 

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