Site updated Tuesday, April 22, 2008
Congenital Heart Defect Statistics
- Links for Adults with CHD
- Medical Sites for Doctors
- Medical sites for Parents
- Support Groups - Adults
- Support Groups - All Ages
- Support Groups - Bereavement
- CHD Foundations
- Other CHD related sites
- Feeding Issues
- Learning Disabilities
- Listservs and Webrings
- Camps
- Transplant Information
- Medical Transport - Air Ambulance, etc.
Congenital Heart Defect Resources
If you know of other resources that should be listed, please Email me at: sdove1@alltel.net Thanks!
Support Groups: Adults with Congenital Heart Defects
Canada
Cachnet Home Page
Canadian Adult Congenital Heart Network: Toronto Congenital Cardiac Centre for
Adults and International Society for Adult Congenital Cardiac Disease
Canadian Adult Congenital Heart
(CACH) Network
Our aim is to provide comprehensive care and information, on the Internet, to
adult patients with Congenital Heart Disease and their care providers.
Ireland
2Hearts
Offers spiritual support - particularly to all those facing the trauma of heart
transplant, congenital heart defect and other heart conditions.
New Zealand
Adults with Congenital Heart Conditions - New Zealand
ACHC New Zealand is still in the beginning stages of becoming an established
group. Two members manage the group while relying on others for support, advice
and confirmation of ideas.
Norway
Foreningen for Hjertesyke Barn
Association of Kids with Heart Defects in Norway
United Kingdom
Grown Up Congenital Heart Patients Association
(GUCH)
The GUCH patients association is run by and for teenagers and adults with
Congenital Heart Disease. It seeks
to support, enabling normal living and to educate society about the needs
and gifts of this new group.
U.S.A.
ACHDSupport
Our purpose is to provide support and to connect adults who have a Congenital
Heart Defect with other adult's with CHD. No matter where you live, what your
defect or how healthy you may be, you always need someone to talk
to, someone who understands. ACHDSupport is here for you.
Adult Congenital Heart Association
This site has a listing of other adult CHD support groups and its newsletter,
The Laurel Wreath.
Support Groups: All Ages
Click on the name to go directly to that country (or state in the US)
Australia
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France
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Heart Kids Inc. - Australia
Heart Kids of SA Inc. is a support group which was formed in South Australia in
1987, to offer comfort and support to families who have a child who is born
with congenital heart problems.
Heartkids Victoria - Family Support Group
Heartkids was formed in 1990 by a group of parents who have children with heart
problems. The group offers non-medical support and understanding to other
families who have had a child
diagnosed with a congenital or acquired heart defect.
Heartkids New South Wales
Heartkids main purpose is to provide support to families dealing with the
realities of having a baby or a child with a congenital heart defect or
acquired heart disease.
Heartkids ACT Inc
HeartKids ACT Inc was formed in 1999 by a group of parents who have children
with Congenital Heart Disease. We felt that there was a need for a group to be
established in the Region as approximately 35 babies are born with a CHD in
Canberra each year.
Heart Kids (WA)
The unique function of Heart Kids (WA) is to provide support and hope to
children and the families of children with congenital and
acquired heart disorders.
Heart to Heart Cardiac Support Group Inc. Queensland
Heart to Heart Cardiac Support Group has grown from a small group of parents
meeting casually
for support in 1984, to our present day group of some 180 members throughout
Queensland and northern New South Wales.
Association belge syndrome de Williams
(Available in French, English, Spanish and Dutch)
Site de l'ASBL Nos Enfants Cardiaques
Children's Heart Awareness in Newfoundland & Labrador
(CHANAL) provides, first and foremost, emotional support to families of
children and individuals with congenital heart defects, along with general
information of particular interest. We are committed to be a liason between
these individuals, the Heart and Stroke Foundation, the Cardiac Departments of
the Childrens' Hospitals, the Provincial Department of Health and Community
Services, and other cardiac support groups.
The Children's Heart Network(CHN)
The Children's Heart Network(CHN) serves the province of British Columbia as a
non-profit organization offering support, information and education to
children, youth and their families living with congenital heart disease.
Working closely with British Columbia's Children's Hospital - Cardiac Sciences
Program, CHN provides: one-to-one support with trained Resource Parents,
Regional meetings, the "Heart Matters" newsletter, the Hearts of Gold Youth
program and a biennial collaborative conference, Growing Up With Heart Disease.
The Children's Heart Society
Through fund-raising and private donations, the Children's Heart Society is
able to support the University of Alberta Pediatric Cardiology Program which is
currently a province wide program, working towards being the pediatric
cardiology centre for Western Canada. We donate items such as essential medical
equipment, toys and support for the Child Life Department, gifts for children
undergoing heart surgery, and help with special holiday events for all
pediatric wards. We also have established an endowment fund for pediatric
cardiology research and education. We
have monthly support meetings, a parent referral list, a bi-monthly
newsletter, bereavement support, and numerous other services, the most important
being solid support for families facing a life with a "heart child."
Circle of Hearts
Manitoba has a Family Support Network for families of children with any type of
congenital heart disease. At VCHC we feel that it would be of great benefit to
talk to parents who have gone through these situations to try and be more
prepared for what is going to happen. This is an extremely traumatic time in
your life and you are not alone.
Heart Defects Society of Windsor and Essex County
The Heart Defects Society of Windsor and Essex County offers compassionate
support within the community, provides educational, emotional and financial
support to improve the quality of life of individuals affected by Congenital
Heart Defects.
Heart Defects Society
c/o Francine Bryar
7325 Tranby Avenue Apt 205C
Windsor, Ontario
N8S 4P4
CANADA
Special Hearts
Special Hearts is a support group for families of children facing heart
problems of all types. Established in Kitchener, Ontario, Canada in 1986,
Special Hearts is a volunteer driven organization that has helped hundreds of
families with information and support services.
CHASE - The Children's Heart Association for Support and Education
We are families who share he common bond of having children with cardiac
problems. We meet together
for education and support. Our goal is to provide support and education for
families of children with heart disease.
email
mailto:CHASEkids@hotmail.com
support group
mailto:CHASEkids@yahoogroups.com
Heart and Coeur
Each month, the newsletter of Heart and Coeur draws up a panorama of the
topicality of the month with a short summary of the principal articles and
links. It mentions also all the innovations put on line in the various headings
of the site.
Association Nationale des Cardiaques Congenitaux
Association Generation 22 (syndr diGeorge)
GENERATION 22: Association des personnes atteintes d'une microdection 22q11
(syndrome de Di George) et leur famille
Site du Syndrome du QT Long
The object of this association is better to know this anomality of the rate of
heartbeat, to facilitate the contacts between
the patients, considering whom we are far from numerous, to exchange of
information, to help by hoping that the researchers can propose to us a
processing adapted to each one among us, considering the various alternatives
of this affection and the more or less serious cases. All people who wish it
can correspond.
Heart and Coeur
A French site with support, calendar, forum, and much more.
http://www.card-ag.de/
and
http://www.card-ag.org/
Dear Parents... We welcome you in the Heart Center (Germany). Your child
suffers from a congenital heart defect and will require an operation. We
understand your fears with regard to this operation. The fear of the unknown
adds to your anxiety. We would like to give as much information
as possible to help you at this time.
Interessengemeinschaft Das herzkranke Kind e. V. (IDHK)
Herzlich Willkommen beim Bundesverband Herzkranke Kind
JEMAH e.V. - Jugendliche und Erwachsene mit angeborenem Herzfehler e.V.
Williams-Beuren-Syndrom-Deutschland e.V.
Tiny Hearts Foundation TINY Hearts Foundation is a charitable organisation set up to help parents of children who are born with birth defects of the heart.
Children's Heart Federation Home Page (U.K. and Ireland)
The CHF provides a range of information, including material produced by the
British Heart Foundation and other groups, about all aspects of bringing up
heart children, from coping with siblings, employers and hospitals, to
explaining the most common heart conditions and relevant treatments, to short
leaflets about looking after your child's teeth.
Heart Children Ireland
Heart Children, set up in 1990, is a parent support group for families of
children with congenital heart defects.
Moylan Family Website and Williams Syndrome
This site is about Williams Syndrome and has lots of other links to Williams
Syndrome sites from around the world.
Hearts Beyond Boundaries
Congenital Heart Disease Overseas Information- This is a Japanese site (in
Japanese with English translation) run by two
Japanese moms who are translating articles into Japanese for their countrymen
to better understand their children's heart defects.
Zenkoku Shinzobyo no Kodomo wo Mamoru Kai (The Association for Children with Heart Disorders, Japan)
The Netherlands Heart Foundation is the driving force in fighting cardiovascular disease, so these will no longer be the major cause of premature death and disability. This is being achieved by stimulating scientific research, improving quality of care and giving health education to the public. The Netherlands Heart Foundation fully depends on donations from the general public.
Williams-Beuren Syndroom
is een Vlaamse vereniging zonder winstoogmerk die de belangen behartigt van de
personen met het Williamssyndroom.
De vereniging heeft tot doel:
- Het doorgeven van informatie en het bijstaan van personen, ouders, hulpverleners en ge﮴eresseerden die te maken hebben met het Williamssyndroom. Het bevorderen van de ontwikkeling en de ontplooiing van personen met het Williamssyndroom, waaronder het streven naar sociale integratie. Het behartigen van materi묥 en immateri묥 belangen van personen met het Williamssyndroom die als gevolg van hun handicap daartoe niet in staat zijn, ongeacht hun leeftijd.
- Alle aanverwante activiteiten die direct of indirect en dit in de ruimste zin van het woord op deze doelstellingen betrekking hebben.
Heart Children New Zealand
Welcome to the website of Heart Children New Zealand. Congenital heart disease
affects one in every 100 children born in New Zealand, or around 600 a year.
Our mission is to provide and facilitate the best support and care for these
children and their families.
'Foreningen for Hjertesyke Barn'
This is an Association of Kids with Heart Defects in Norway.
Menudos Corazones
Menudos Corazones es miembro de la Fundación Española del Corazón y de la
Plataforma de Organizaciones de Infancia (POI)
E-mail:
federacion@menudoscorazones.org
Elternvereinigung f? herzkranke Kind
Seither engagieren wir uns in den folgenden Hauptbereichen:
- Hilfe zur Selbsthilfe
- Zusammenarbeit mit Fachleuten
- Ö¦fentlichkeitsarbeit
- Freizeitangebot f?zkinder
The 22q11 Group (UK Support Group)
The 22q11 Group was founded in England by parents of children diagnosed with
Velo-Cardio-Facial Syndrome and Di George Syndrome resulting from a deletion
within chromosome 22.
The Association for Children with Heart Disorders; U.K.
Formed in the UK in 1973, the Association for Children with Heart Disorders
(TACHD) is a support group run by families and friends of cardiac children for
families with, or who have had, children with heart disorders.
Children's Heart Federation Home Page
The Children's Heart Federation (CHF) brings together groups across Britain and
Ireland so that they can share problems, ideas, approaches and educational
materials designed to help heart children.
CRY
CARDIAC RISK IN THE YOUNG
CRY is a charity that raises awareness of Cardiac Risk in the Young.
Down's Heart Group
The Down's Heart Group is a UK charity which offers support and information to
families who have a member with Down's Syndrome and congenital heart defects.
ECHO - Evelina Children's Heart Organisation
ECHO is an entirely voluntary organisation, run by parents for the families of
children born with heart conditions who
are treated at
Guy's Hospital
in London.
HeartLine Association for Children with Congenital heart defects
We provide information on congenital heart defects, in the form of fact sheets
about children in hospital, their rights, medicines, pain, preparation for
surgery, different disorders, education, exercise, feeding problems etc.
available from the Office.
Heartlink
Whenever possible, we aim to provide you with support, information and advice.
Our comprehensive services operate 24 hours a day, with unconditional and
confidentiality to anyone seeking support.
Left Heart Matters
Left Heart Matters is a support group for children who have the congenital
heart defect known as hypoplastic left heart syndrome (HLHS). The group has a
number of objectives, which include raising the public and medical profession's
awareness of HLHS, and providing support and advice to parents who have a child
with HLHS.
Marfan Association UK
Information and support for patients affected with Marfan Syndrome
Williams Syndrome Foundation (UK)
The Williams Syndrome Foundation (UK) was formed, as a Registered Charity, in
1980, with the twin aims of research, and the help and support of families with
affected children.
United States
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National Organizations for Childhood Diseases and Defects
The ARC Sibling Support Project
The Sibling Support Project is a national program dedicated to the interests of
brothers and sisters of people with special health and developmental needs. The
Project's primary goal is to increase the availability of peer support and
education opportunities for brothers and sisters of people with special health
and developmental needs.
The Genetic Alliance
The Genetic Alliance is an international coalition representing more than 300
consumer and health professional organizations with
millions of members--all working together to promote healthy lives for everyone
impacted by genetics.
Hearts of Courage
Hearts of Courage is for:parents of medically fragile children, with
special health care needs or who are chronically ill with multiple
medical conditions, or who are fighting life-threatening illness.
If you have ever had your child hospitalized for a long duration,
stay inside a PICU (intensive or critical care) setting or a NICU
(neonatal intensive or critical care unit) It can be an overwhelming
stressful time for you.
Hearts of Courage is where you belong.
Kids With Heart National Assn for Children's Heart Disorders, Inc.
Kids With Heart is a Congenital Heart Defect support group which offers support
to families of children with congenital heart defects.
Kids with Heart National Association for Children's Heart Disorders, Inc.
1578 Careful Drive
Green Bay, WI 54304
michelle@kidswithheart.org
MUMS National Parent to Parent Network
MUMS is a national Parent-to-Parent organization for parents or care providers
of a child with any disability, rare or not so rare disorder, chromosomal
abnormality or health condition. MUMS' main purpose is to provide support to
parents in the form of a networking system that matches them with other parents
whose children have the same or similar condition.
The National Information Center for Children and Youth with Disabilities
NICHCY is the national information and referral center that provides
information on disabilities and disability-related issues for families,
educators, and other professionals. Our special focus is children and youth
(birth to age 22).
National Organization for Rare Disorders
Since 1983 . . . working toward the prevention, treatment and cure of rare
"orphan" diseases.
Comprehensive WS Home Page
The by-laws of the Williams Syndrome Foundation state that the corporation is
organized to:
- Promote the investigation of the causes and appropriate treatment of Williams syndrome and other conditions which may be related to or associated with Williams syndrome.
- Encourage and sponsor medical research related to Williams syndrome and related disorders.
- Provide educational materials to the general public with respect to the syndrome and related disorders.
- Provide support to other organizations that are tax exempt under section 501 (c) (3) of the Code in furtherance of the foregoing purposes.
Mended /Little/ Hearts of Anchorage - Anchorage, AK
Arizona Heart 2 Heart Support Group
Home Page of Arizona Children's Heart Foundation
Hearts for Hearts' Sake
Parents Helping Parents
Mended /Little/ Hearts of Central California - Fresno, CA
Cardiac Kids
Little Hearts
THE FAMILY NETWORK on DISABILITIES of FLORIDA
Mended Little Hearts of St. Petersburg/Tampa
Mended /Little/ Hearts of Joe DiMaggio Children's Hospital, Florida
Mended /Little/ Hearts - Jacksonville, Florida
KIDS AT HEART
Parent to Parent of Georgia
Intermountain Healing Hearts
Mended /Little/ Hearts/Big Dreams for Little Hearts - Chicago, IL
Children's Heart Services
Our Hearts
Mended /Little/ Hearts/Heart-To-Heart, Iowa
Congenital Heart Defect Families Association
Families Together Inc
www.itsmyheart.org/louisiana
The Heart to Heart Fund
Massachusetts Heart Coalition - Partners at Heart
The Massachusetts Heart Coalition started as a small nucleus of individuals
whose lives were touched by Congenital Heart Defects. Our desire to eradicate
congenital heart defects by educating the public, advocating for the rights and
needs of the CHD community, and informing others of the need for research is
what motivates us. We accomplish this through fostering partnerships among
individuals and groups whose goals align with the Massachusetts Heart
Coalition's mission.
www.itsmyheart.org/boston
St. Louis Children's Hospital: Heart to Heart
Intermountain Healing Hearts
Parents, Let's Unite for Kids
Bless Their Hearts
Triangle Mended Little Hearts
- Durham, North Carolina
Mended /Little/ Hearts/ The Tinman Club - Western North Carolina
Supporting midwest families touched by CHD. For more information contact Marci
Smith at
president@midwestheartconnection.com
or Sue Peterson at membercoord@midwestheartconnection.com
Intermountain Healing Hearts
Little Hearts
www.itsmyheart.org/newjersey
Little Hearts
Parents Reaching Out
Helping Hearts
www.itsmyheart.org/hudsonvalleyny
Mend-A-Heart
Little Hearts
www.itsmyheart.org/cleveland
Mended /Little/ Hearts/Glass City, Ohio
Hershey Hearts
Littlehearts (North Central PA)
Fontan Friends
Mended /Little/ Hearts/Southeastern Pennsylvania
Family Connection
Palmetto Hearts
South Dakota Parent Connection
THUMPERS - Black Hills of South Dakota
Saving Little Hearts
Mended Little Hearts of San Antonio
March, April, July, Aug., Nov., and Dec. Meetings are held at:
Heart to Heart
Second Wind
The Hearts and Souls Home Page, Fort Worth, TX
Milagros (Miracles)
Saving Little Hearts
www.itsmyheart.org/houston
www.itsmyheart.org/sanantonio
www.itsmyheart.org/austinmilagros
Intermountain Healing Hearts
www.itsmyheart.org/fredericksburg
Mended /Little/ Hearts of Richmond, Virginia
My Baby's Got Heart
Tacoma support group
Kids With Heart
Lefthearts
Intermountain Healing Hearts
Parent Information Center
Contact: Trista Stockwell
907-694-1472
Trista71@gci.net
This group was started in order to help families going through the difficult
times associated with a child who has congenital heart defects, by people who
have CHD children that are either in recovery, or are recovering. We understand
the difficulties that parents and children go through, and even how it doesn't
always work out the way we want it to.
The mission of the Arizona Children's Heart Foundation is to help children with
heart disease and their families to live lives
as full and normal as possible.
Hearts for Hearts' Sake is an organization for families in Northern California
who have children with congenital heart defects. Through a quarterly
newsletter, parent matching,
parent-to-parent support and fun social gatherings, we strive to reduce the
stress for families with "heart" children.
PHP is a comprehensive, not-for-profit family resource center run for and by
parents of children with special needs.
Contact: Carlie McCorvey
559-734-7876
mom2macandzach@sbcglobal.net
The mission of Cardiac Kids is to:
We are a non-profit organization that provides support, support, networking,
and hope to families affected by congenital or acquired heart defects.
Founded in January of 1998 by a mother to a child born with a congenital heart
defect, we are headquartered out of Connecticut but serve many families
on the East Coast, primarily the New England and surrounding states. Membership
consists of parents who have a child living with a congenital heart defect
(CHD) as well as parents expecting a child with a CHD, to adults who were born
with a CHD, and to those parents whose children lost their battles to CHD. Our
mission is to offer support to families
affected by CHD, to promote public awareness for congenital heart defects (the
#1 birth defect), and to raise funds for CHD Research.
Family Network is an organization that draws strength, information and support
from networking.
Stefanie Pablo - Group Coordinator
941-234-6789
Contact: Chuck DiComo
954-981-6346
chuck@dicomo.net
Website:
http://www.mendedlittleheartsofjacksonville.org/
Contact: Amanda Eason
904-334-3273
amandaeason@bellsouth.net
Contact: Angela Livesay
904-278-4079
jaxgator97@comcast.net
KIDS AT HEART is the Sibley Heart Center's Family-Focused Resource group for
those who have children with heart defects. The primary purpose of KIDS AT
HEART is to unite children with similar health concerns in a supportive
environment where families can establish meaningful friendships with one
another. Contact Marsha Elixson (Development Coord.)
marsha.elixson@choa.org
Parent to Parent of Georgia is a non-profit organization providing support and
information to parents of children with disabilities. We serve families who
live in the state of Georgia (U. S. A.). Our services are based on the
philosophy that one of the most meaningful sources of support are other parents
who have experienced parenting a child with a disability. All services are
free.
We are families that live in the Intermountain West (Idaho, Montana, Nevada,
Wyoming, & Utah) that have
children who have Congenital Heart Defects (some living and Angels) that have
seen doctors at the clinic or have
spent time at Primary Childrens Medical Center located in Salt Lake City, Utah.
PO Box 581306
Salt Lake City, UT 84158-1306
Toll Free: (800) 397-1174
Email:
info@intermountainhealinghearts.org
Contact: Kathleen Mappa
815-609-3932
kmappa@dslextreme.com
We are striving to provide the Chicagoland area with a giving, growing
organization for parents, families and children with
heart defects and to promote public awareness of congenital heart defects and
acquired heart disease in childhood. Together we are seeking to enhance each
other's lives by discussing our experiences and by sharing our knowledge and
emotions.
Susie DeLoach and Amy Dini are the founders of Our Hearts. We both have
children that were born with CHD. At that time there were no support support
available, so we combined efforts to create Our Hearts in 1998. Goals for Our
Hearts:
* Create a database to connect families dealing with like defects
* Regional meetings and fund-raising activities
* Quarterly newsletters and welcome packets
* One on one parent support
* Social gatherings
Contact: Lori Means
515-979-2721
means.lori@principal.com
This is a very active support group for families and adults with CHDs. They
are in the Kansas City, Ks and Kansas City, MO metro area.
Families Together is a statewide non-profit organization serving families in
Kansas with a son or daughter with a disability. The
program's mission is to offer families the security of belonging to a group of
caring individuals with similar goals, challenges, and needs. Parents are
informed as to the availability of support and services throughout the state
and receive maximum use of such services. Families Together
provides a variety of activities for parents and family members of
children/youth with disabilities to encourage change toward positive
expectations.
It's My Heart
P.O. Box 13853
Alexandria , LA 71315
(318) 487.1930
Louisiana@itsmyheart.org
The mission of The Heart to Heart Fund is to provide emotional and financial
support to families who have children with heart disease in the Division of
Pediatric Cardiology at the Floating Hospital for Children. In
addition to providing personal patient and family support, this fund will
enhance the support available to care for our patients.
mailto:ssturner@mindspring.com
It's My Heart
P.O. Box 247
Dracut , MA 01826
(978) 328.4716
boston@itsmyheart.org
A support group for families of children born with congenital heart defects
We are families that live in the Intermountain West (Idaho, Montana, Nevada,
Wyoming, & Utah) that have
children who have Congenital Heart Defects (some living and Angels) that have
seen doctors at the clinic or have
spent time at Primary Childrens Medical Center located in Salt Lake City, Utah.
PO Box 581306
Salt Lake City, UT 84158-1306
Toll Free: (800) 397-1174
Email:
info@intermountainhealinghearts.org
PLUK is a private, nonprofit organization formed in 1984 by parents of children
with disabilities and chronic illnesses in the state of Montana for the purpose
of information, support, training and assistance to aid their children at home,
school and as adults.
Bless their Hearts is a nonprofit organization whose mission is to personally
reach out to congenital heart defect patients and their families by providing
support and promoting a greater awareness through support and educational
opportunities.
Denise Bailey
919-552-3894
denise@tmlh.org
Contact: Kari Crawford
336-713-2228
kcrawfor@wfubmc.edu
We are families that live in the Intermountain West (Idaho, Montana, Nevada,
Wyoming, & Utah) that have
children who have Congenital Heart Defects (some living and Angels) that have
seen doctors at the clinic or have
spent time at Primary Childrens Medical Center located in Salt Lake City, Utah.
PO Box 581306
Salt Lake City, UT 84158-1306
Toll Free: (800) 397-1174
Email:
info@intermountainhealinghearts.org
Our mission is to offer support to families affected by CHD, to promote
public awareness for congenital heart defects (the #1 birth defect), and to
raise funds for CHD Research.
It's My Heart
P.O. Box 207
Bloomingdale , NJ 07403
(973) 283.4316
newjersey@itsmyheart.org
Our mission is to offer support to families affected by CHD, to promote
public awareness for congenital heart defects (the #1 birth defect), and to
raise funds for CHD Research.
Parents Reaching Out (PRO) is a statewide non profit organization that provides
support, training and information throughout New Mexico to parents of children
and the professionals who work with them. Founded and operated by families in
1981, PRO has been helping parents of children with disabilities and special
health care needs. Since 1998, we expanded our scope of work to include all
families and all children.
Serving families and friends of children with congenital heart conditions.
Rochester, NY.
It's My Heart
P.O. Box 501
Plattekill , NY 12568
(845) 566.5627
hudsonvalleyny@itsmyheart.org
The Mend-A-Heart support group at NYU Medical Center provides the opportunity
for parents of children with heart disease to discuss issues relevant to their
children in a warm, supportive, and relaxed
environment. These monthly meetings usually begin with an expert discussing such
topics as health insurance, medications, school issues, and discipline. Then,
parents have a chance to talk together. Adolescents and young adults with heart
disease are also encouraged to attend.
Our mission is to offer support to families affected by CHD, to promote
public awareness for congenital heart defects (the #1 birth defect), and to
raise funds for CHD Research.
OH
It's My Heart
P.O. Box 225
Girard , OH 44420
(330) 530.2534
cleveland@itsmyheart.org
Contact: Jill Snyder
419-867-4858
jwjs471@aol.com
Formed in 1996 in association with the Milton S. Hershey Medical Center,
Hershey Hearts is a support group for parents, siblings, and other family
members of children who have been touched by congenital heart disease.
Our mission is to offer support to families affected by CHD, to promote public
awareness for congenital heart defects (the #1 birth defect), and to raise
funds for CHD Research.
A support group for parents and caregivers of those who have or need to have
the Fontan procedure.
Contact: Holly Swanson
717-364-4542
hollyannswanson@comcast.net
Family Connection is a support network for families who have children with
special needs. Founded in 1990, we're here to help
thousands of children in South Carolina reach their potential by providing
parent-to-parent connections, linking families to community support,
and sponsoring a number of educational and support programs.
Palmetto Hearts serves and supports South Carolinians touched by Congenital
Heart Defects and Diseases. Believing individuals’ and families’ needs vary as
greatly as the CHDs affecting them, we offer several types of
support—emotional, informational, and social. We also provide care packages for
those with a loved one undergoing surgery. Through such efforts, we hope to
share the trials and celebrate the joys of loving someone with a CHD.
sara@palmettohearts.org
leslie@palmettohearts.org
Our Mission is to empower families caring for children with disabilities with
knowledge and support to participate fully in the planning and delivery of
quality educational services.
Contact: Stephanie Farrokhi
605-722-7010
farrokhi@spe.midco.net
The mission of Saving Little Hearts is to help disadvantaged children with
congenital heart defects in Knoxville, Tennessee and the surrounding area,
primarily through fund-raisers and community awareness programs. Saving Little
Hearts strives to provide these children with enriching, educational and fun
experiences which will help them build friendships and confidence.
Mended Little Hearts meet once a month on the 4th Wednesday of every month: *
Jan., Feb., May, June, Sept., and Oct. Meetings are held at:
John E. Hornbeak Building
4450 Medical Drive, On the 2nd Floor - Brazos Classroom
San Antonio, Texas 78229
6:30 pm - 8:00 pm
Christus Santa Rosa Hospital Downtown
333 N. Santa Rosa St., 5th Floor Child Life Center
San Antonio, TX 78207
6:30 pm – 8:00pm
* In an effort to be more convenient to the surrounding areas; we meet every two
months at each hospital.
Founded in October 1980 by parents of children with congenital heart disease
(CHD), Heart to Heart was established in the interest of sharing experiences
and information with others. Heart to Heart continues this mission today while
also promoting public awareness of all pediatric cardiac issues and the
overwhelming need for continued innovative pediatric cardiac research. Heart to
Heart's objectives are: to inform CHD families of community support and other
pertinent information, to provide educational meetings, informative booklets, a
lending library, a telephone network, a website, and a quarterly newsletter.
Heart to Heart offers support to parents during diagnosis, cardiac
catheterization and/or surgery as well as through planned hospital visitations,
informal gatherings, group sessions and social functions. Heart to Heart is
open to anyone interested in congenital heart disease and/or pediatric cardiac
issues.
Heart to Heart meets on the second Thursday of each month at:
Children's Medical Center of Dallas
1935 Motor Street
Dallas, TX 75235
Cardiology Clinic ~3 WEST
A listing of support groups in Texas.
Formed in conjunction with Cook Children's Medical Center in Fort Worth, Texas,
to provide a way for parents to talk one-on-one with each other, sharing their
experiences, concerns, and questions. Hearts and Souls also provides
information and answers to questions about subjects ranging from Fort Worth
accommodations to financial concerns.
Milagros is the new family support group of the Pediatric Heart Program at
Children's Hospital of Austin. The program meets the second Monday of each
month at 7 p.m. in the Conference Rooms
on the Lower Level of Children's Hospital of Austin. Any parent of a pediatric
heart patient is welcome, whether the child receives services
at Children's Hospital of Austin or elsewhere.
Saving Little Hearts is dedicated to helping children with congenital heart
defects and their families by providing financial and emotional assistance and
educational information. Saving Little Hearts also strives to provide
enriching, educational and fun experiences for these children which will help
them build friendships and confidence.
Houston - National Office
It's My Heart
2101 Crawford, Suite 313B
Houston , TX 77002
(281) 578.7343
(888) HEART.07
info@itsmyheart.org
San Antonio
It's My Heart
P.O. Box 6692
San Antonio , TX 78209
(210) 379.9900
sanantonio@itsmyheart.org
Austin
It's My Heart - Milagros
PO Box 29723
Austin , TX 78755
(512) 345.2605
austin@itsmyheart.org
We are families that live in the Intermountain West (Idaho, Montana, Nevada,
Wyoming, & Utah) that have
children who have Congenital Heart Defects (some living and Angels) that have
seen doctors at the clinic or have
spent time at Primary Childrens Medical Center located in Salt Lake City, Utah.
PO Box 581306
Salt Lake City, UT 84158-1306
Toll Free: (800) 397-1174
Email:
info@intermountainhealinghearts.org
It's My Heart
P O Box 471
Locust Grove , VA 22508
(540) 424.6413
fredericksburg@itsmyheart.org
Contact: Jodi Lemacks
804-378-3541
jlemacks@verizon.net
This is a CHD forum and online chat group. We are only a few members strong,
but always looking for more support.
Homepage of the Tacoma, WA support group.
Kids With Heart (KWH) is a Congenital Heart Defect support group which offers
support to families of children with congenital heart defects.
Parent
Matching
: Looking to talk with another parent? We can send you several matches by
diagnosis, location, hospital, etc.
Left Hearts is a support group for parents and families with children
diagnosed with hypoplastic left heart syndrome (HLHS).
We are families that live in the Intermountain West (Idaho, Montana, Nevada,
Wyoming, & Utah) that have
children who have Congenital Heart Defects (some living and Angels) that have
seen doctors at the clinic or have
spent time at Primary Childrens Medical Center located in Salt Lake City, Utah.
PO Box 581306
Salt Lake City, UT 84158-1306
Toll Free: (800) 397-1174
Email:
info@intermountainhealinghearts.org
PIC can be of help to you