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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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