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Our Special Family
Written by: Dolly Lee
They call us a support group,
but it is so much more,
It's a world wide family, all inside our doors.
It is a sad thing, the reason we are here,
Our children's hearts are not well, we are full of fear.
Each child's problem differs,
yet they are all alike,
They are kids with heart defects fighting for their lives.
We all ask the same question, how would I survive
Without this group, my other family, walking by my side?
Most of us have never met and
probably never will,
Yet, we can still carry each other up the steepest hills.
We reach out through the Internet, to those who truly know,
Our hands are joined together all around the globe.
The Congenital Heart Information Network is pleased to offer online discussion
groups for both families and Health Professionals.
With the exception of PCNurse,
our online groups are currently available as a service to members of the
Congenital Heart Information Network. For more information about joining
our organization, click here.
To learn more about our list policies, click here.
C.H.I.N. Lists For Professionals
PCNurse
An online discussion forum specifically for nursing professionals who
work with infants, children, and/or adults with CHD.
- To subscribe: send e-mail to: Mona
Barmash at <mb@tchin.org>
- Prior to being approved for inclusion on this list, you will be
asked to submit your full name, title, and hospital/practice affiliation.
C.H.I.N. Lists For Families
The following is a list of online support groups sponsored by the Congenital
Heart Information Network that you might wish to participate in. Our groups
give you the opportunity to communicate safely by email with hundreds of
other C.H.I.N. Members throughout the world!
Our online support groups are one of the benefits of membership in the
Congenital Heart Information Network. If you are not yet a member,
click here for
more information.
ACHD - Adults with Congenital
Heart Defects
An online support group and discussion forum for adults with congenital
heart defects and interested health professionals. Click
here for additional ACHD resources.
Click here to subscribe, unsubscribe, or manage
your ACHD list subscription
CHDL - Congenital Heart Disease Loss Support
An online support group specifically for families who are coping with
the loss of a loved one. Note: at the request of our members, the CHDL
list is closed to those who have not experienced the loss of a loved one.
Click here to subscribe, unsubscribe, or manage
your CHDL list subscription
GPCHD - Grandparents of Children and Adults with
Congenital Heart Defects
For Grandparents of infants, children, and young adults with Congenital
Heart Defects.
Click here to subscribe, unsubscribe, or manage
your GPCHD list subscription
HLHS - Hypoplastic Left Heart Syndrome
An online support group and discussion forum for families of children
with Hypoplastic Left Heart Syndrome and interested health professionals.
Click here to subscribe, unsubscribe, or manage
your HLHS list subscription
HTX - Heart Transplant Support Group
A forum for support and information sharing for families and individuals
dealing with heart or heart-lung transplants due to heart defects or childhood-onset
heart disease. Subscribers facing the possibility of transplant or otherwise
interested in the issues surrounding transplanted survivors of childhood-onset
heart disease are also welcome.
Click here to subscribe, unsubscribe, or manage your
HTX list
subscription
PDHeart
A list for families of children with Congenital Heart Defects and Childhood
Onset Heart Disease. Since it was first started in 1995, PDHeart
has consistently been one of the busiest CHD support lists on the
Internet.
Click here to subscribe, unsubscribe, or manage
your PDHEART list subscription
PTCHD - Parents of Teens with CHD
An online support group and discussion forum for parents of teens and
young adults with congenital heart defects and interested health professionals.
Click here to subscribe, unsubscribe, or manage
your PTCHD list subscription
SACHD - School-Age Children with CHD
For parents of school-aged children with Congenital Heart Defects.
Click here to subscribe, unsubscribe, or manage
your SACHD list subscription
Regional Lists
OHIO - Members Discussion Group
An online support group/discussion
forum for parents, adults with CHD, and family members of children who
have Congenital Heart Defects in the state of Ohio. Interested health
professionals are also invited to subscribe and participate in
discussions.
Click here to subscribe, unsubscribe, or manage
your OHIO list subscription
PHILLY - Members Discussion Group
An online support group/discussion
forum for parents, adults with CHD, and family members of children who
have Congenital Heart Defects in Philadelphia, surrounding counties, Central
through South New Jersey, and Delaware. Interested health
professionals are also invited to subscribe and participate in
discussions.
Click here to subscribe, unsubscribe, or manage
your PHILLY list subscription
Other Lists
The following is a list of online support resources available
through other organizations:
Down Syndrome
To subscribe, send e-mail to: <listserv@listserv.nodak.edu>
Herzkinderforum
A German language mailing list for families of children with congenital
heart defects.
Das Herzkinderforum ist der einzige deutschsprachige listserver fuer
Familien mit Kindern mit angeborenen Herzfehlern. Er schafft eine Plattform
zum Austausch von Erfahrungen und Informationen und zur gegenseitigen
Unterstuetzung. Wenn Sie ein Herzkind haben, wenn Sie selbst betroffen
sind oder Sie aus anderen Gruenden das Thema interessiert, sind Sie gerne
zur Teilnahme eingeladen.
Bei Problemen, Fragen und Anregungen steht Ihnen der listmaster zur
Verfuegung unter bernd.asselborn@koeln.netsurf.de
Kawasaki Syndrome
A mailing list primarily serving families with children who suffered
from this pediatric inflammatory illness that threatens a child's cardiovascular
system. The list is associated with the Kawasaki Families' Network, however,
it is open to any subscriber interested in the syndrome.
To subscribe, send e-mail to: <listproc@hawaii.edu>.
In the body of the message type:
SUBSCRIBE kawasaki-l FIRSTNAME LASTNAME
Noonan Syndrome
The Noonan Syndrome Support Group operates a list service, for any
one affected by Noonan Syndrome.
To subscribe, send e-mail to <listserv@home.ease.lsoft.com>.
In the subject and body of the message, type:
SUBSCRIBE NOONAN-SYNDROME
VCFS Digest
An email list for individuals, and families dealing with VCFS/DiGeorge
Syndrome (22q11.2 deletion). Researchers and professionals are also invited
to participate.
To subscribe, send e-mail to: <listserv@maelstrom.stjohns.edu>
In the subject and body of the message, type:
subscribe VCFS yourfirstname yourlastname
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