Page updated Nov 27, 2013

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Congenital Heart Defect Resources

Disclaimer: Here are some links which you might find helpful. Inclusion on this list does not imply endorsement and is meant only for informational purposes. Always consult with your doctor or medical professionals for accurate, up-to-date information and for answers to your questions.

If you know of other resources that should be listed, please Email me at: sdove1@windstream.net Thanks!


Support Groups: Adults with Congenital Heart Defects

Canada

The Canadian Congenital Heart Alliance

Canadian Adult Congenital Heart 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 aims to provide social contact between adults with congenital heart conditions. In the future this could take the form of organised coffee get-togethers, outings and activities. This is a chance to share experiences and grow in knowledge about our heart conditions.

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
This online support group is a place to discuss personal stories, experiences, and things of common interest and to support one another. ACHDSupport is a wonderful group of caring people who are here for you to support you when you need. No matter if you just need to talk about something in your every day life, need a shoulder, or answers to a question, that’s what we are here for. We are a special family and we hope you will enjoy meeting others from around the globe.

Adult Congenital Heart Association
The Adult Congenital Heart Association (ACHA) is a nonprofit organization which seeks to improve the quality of life and extend the lives of congenital heart defect survivors. Through education, outreach, advocacy and promotion of research, ACHA serves and supports the more than 1.8 million individuals with congenital heart defects, their families, and the medical community.

Utah Adults with Congenital Heart Support Group: Contact Carrie Rydin for more info.

Support Groups: All Ages

Click on the name to go directly to that country (or state in the US)
Australia | Belgium | Canada | France | Germany | India | Ireland | Italy | Japan | Netherlands | New Zealand | Norway | Spain | Switzerland | United Kingdom
United States:
Nationwide | AL | AK | AZ | AR | CA | CO | CT | DE | FL | GA | HI | ID | IL | IN | IA | KS | KY | LA | ME | MD | MA | MI | MN | MS | MO | MT | NE | NV | NH | NJ | NM | NY | NC | ND | OH | OK | OR | PA | RI | SC | SD | TN | TX | UT | VT | VA | WA | WV | WI | WY |


Australia

Heart Kids Inc. - Australia
At HeartKids we strive to offer support, encouragement and hope to families of children with Heart Disease, while raising awareness and vital funding into the causes of this chronic disease. While for many families of these children the future is clouded with uncertainty, our goal is to secure the futures of our very special kids. We are also seeking to gain greater public awareness and support for our cause so that we can make a real difference. We have recently partnered with leading cardiologists and researchers with the aim of providing them with financial support to assist them with research and management of children with heart disease.

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.

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.

Belgium

Association belge syndrome de Williams
(Available in French, English, Spanish and Dutch)

Site de l'ASBL Nos Enfants Cardiaques

Canada

The Canadian Congenital Heart Alliance
The Canadian Congenital Heart Alliance (CCHA) is a registered charitable organization made up of patients with a congenital heart defect, their friends, families, and the medical community. With your support, we aim to improve the quality of care for these patients, many of whom require lifelong expert care.

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.

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.

France

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

Génération 22
GENERATION 22: Association des personnes atteintes d'une microdection 22q11 (syndrome de Di George) et leur famille

Germany

Heart Center Münster
We welcome you in the Heart Center Münster (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)
Die IDHK wurde 1978 in Essen gegründet und hat das Ziel, herzkranken Kindern und ihren Familien zu helfen. Die Hilfe umfasst das gesundheitliche, erzieherische, berufliche und soziale Wohl der Betroffenen.

JEMAH e.V. - Jugendliche und Erwachsene mit angeborenem Herzfehler e.V.
Die Bundesvereinigung JEMAH e.V. (Jugendliche und Erwachsene mit angeborenem Herzfehler) ist ein eingetragener Verein, der 1997 von Betroffenen, die bereits mit einem angeborenem Herzfehler das Erwachsenenalter erreicht haben, gegründet wurde.

Williams-Beuren-Syndrom-Deutschland e.V.

India

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.

Ireland

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.

Williams Syndrome Association of Ireland
The Williams Syndrome Association of Ireland (WSAI) was set up in the late 1980's as a support group for families of WS individuals in Ireland. The WSAI provides support to members through annual conferences, social gatherings and the issue of regular newsletters. It also works to make the medical, teaching and other professional groups more aware of the Williams Syndrome condition. This helps to ensure that children with WS are diagnosed at an early age and that they receive the early intervention that is so vital to them.

Italy

Associazione Piccoli Cuori
We are parents who, after having lived the experience of having a child carrier of congenital heart disease, want to be helpful to those who are about to face this experience.

Japan

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 (National Association to Protect Children's Heart Disease)

Netherlands

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:

  1. 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.
  2. Alle aanverwante activiteiten die direct of indirect en dit in de ruimste zin van het woord op deze doelstellingen betrekking hebben.

New Zealand

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.

Norway

'Foreningen for Hjertesyke Barn'
This is an Association of Kids with Heart Defects in Norway.

Scotland Heart Mummies for Scotland
♥ Heart Mummies For Scotland (HMFS) ♥ "Support and Strength in A Heartbeat" for those "Born With A Special Heart"

Spain

Menudos Corazones
Menudos Corazones es miembro de la Fundación Española del Corazón y de la Plataforma de Organizaciones de Infancia (POI)

Switzerland

Elternvereinigung für das herzkranke Kind
Our association supports parents concerned and their heart children

United Kingdom

The 22 Crew
Funding research and providing social, educational and medical support for all those affected by 22q deletion syndrome.

The 22q11 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 aim of the group is to provide information, advice and support to families affected by the deletion and to provide a contact register enabling families of children with similar symptoms to contact each other.

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.

Little Hearts Matter
Little Hearts Matter offers support and information, and raises awareness of those affected when a child has only half a heart, due to conditions such as Hypoplastic Left Heart Syndrome (HLHS), Pulmonary Atresia, Tricuspid Atresia or Double Inlet Ventricle.

United States
Nationwide | AK | AL | AR | AZ | CA | CO | CT | DE | FL | GA | HI | IA | ID | IL | IN | KS | KY | LA | ME | MD | MA | MI | MN | MO | MS | MT | NC | ND | NE | NH | NJ | NM | NV | NY | OH | OK | OR | PA | RI | SC | SD | TN | TX | UT | VT | VA | WA | WV | WI | WY |


National Organizations for Childhood Diseases and Defects

BraveKids.org
Brave Kids was founded on June 9, 1999, by Kristen Fitzgerald, after the loss of her two children to catastrophic illnesses. The Brave Kids program has been approved by and is linked to over 20 national health organizations such as: The National Kidney Foundation, The Epilepsy Foundation of Northern California, the National Institute of Health and The American Lung Association.

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.

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.

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.

National Dissemination Center for Children with Disabilities
NICHCY is very pleased to offer you a wealth of information on disabilities! We serve the nation as a central source of information on:

  • disabilities in infants, toddlers, children, and youth,
  • IDEA, which is the law authorizing special education,
  • No Child Left Behind (as it relates to children with disabilities), and
  • research-based information on effective educational practices.

National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

Comprehensive Williams Syndrome Comprehensive Web Site
The Williams Syndrome Foundation (WSF) seeks to create or enhance opportunities in education, housing, employment and recreation for people who have Williams Syndrome and other related or similar conditions. The WSF identifies, initiates, funds and provides strategic guidance for major, long-range development projects, either by itself, or by cooperating with other. organizations.

AL

AK

Mended Little Hearts of Anchorage
Mended Little Hearts, a support program for parents of children with heart defects and heart disease, is dedicated to inspiring hope in those who care for the littlest heart patients of all. Mended Little Hearts offers resources and a caring support network as families find answers and move forward to find healing and hope.

AZ

Arizona Children's Heart Foundation
Motivated by the needs of our children, the goal of The Children’s Heart Foundation is to bring health, hope and happiness to children impacted by congenital heart defects, the number one birth defect in the United States. We accomplish this goal by funding the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.

AR

CA

Parents Helping Parents
Parents Helping Parents (PHP) is a non-profit, community-based, parent-directed family resource center. PHP provides lifetime guidance, supports and services to children with any special need, their families and the professionals who serve them.

Mended /Little/ Hearts of Central California
Mended Little Hearts, a support program for parents of children with heart defects and heart disease, is dedicated to inspiring hope in those who care for the littlest heart patients of all. Mended Little Hearts offers resources and a caring support network as families find answers and move forward to find healing and hope.

It's My Heart Fresno It’s My Heart is a non-profit organization created to provide support to and advocating for those affected by Acquired and Congenital Heart Defects. Through awareness, resources and education, It’s My Heart creates alliances and networks among families, groups, hospitals, and the community.

CO

Cardiac Kids Cardiac Kids is a support group for the families of children at The Children’s Hospital of Colorado with heart disorders. Members understand the hardship of learning that your child has a serious heart disorder, and how helpful it can be to talk to someone who has been through the same experiences. Cardiac Kids provides one-on-one connections, volunteer hospital visits, information resources and journals to parents and opportunities to meet other parents and children with heart disorders. To request parent support or to get involved in Cardiac Kids, ask your nurse, cardiologist or transplant coordinator for more information on how to contact Cardiac Kids.

CT

Little Hearts
Little Hearts, Inc. is a national organization providing support, education, resources, networking, and hope to families affected by congenital heart defects. Membership consists of families nationwide who have or are expecting a child with a congenital heart defect.
Our mission is to offer support, education and hope to families affected by congenital heart defects through our support services and to promote public awareness for this #1 birth defect.

DE

FL

THE FAMILY NETWORK on DISABILITIES of FLORIDA
Family Network on Disabilities is a national network of individuals of all ages who may be at-risk, have disabilities, or have special needs and their families, professionals, and concerned citizens.
The mission of Family Network on Disabilities is to ensure through collaboration that individuals have full access to family-driven support, education, information, resources, and advocacy and to serve families of children with disabilities, ages birth through 26, who have the full range of disabilities described in section 602(3) of IDEA.

Mended /Little/ Hearts - Jacksonville, Florida
We are a group of mothers and fathers who want to make a difference in the lives of our children who have been through numerous open heart surgeries, catheterizations, life support situations, and many other invasive procedures as we hold on to every word of hope that the doctors give us for our precious children. We want to make the outlook for our children better through giving to research and providing the VERY best care for them. We also want to provide wonderful memories and opportunities for our children to cherish. We hope that this site will provide useful information for parents and be a resource of support.

Mended little hearts of St Perersburg
Po Box 3736
Apollo Beach, Fl 33572
813.671.7162

GA

KIDS AT HEART
Kids at Heart, a program sponsored by the Children’s Sibley Heart Center, offers the opportunity for parents, families, and caregivers of children with congenital heart defects to come together and share their experiences created by a common bond.

Parent to Parent of Georgia
Parent to Parent of Georgia provides support and information services and training and leadership opportunities for families who have children and youth with disabilities.

HI

ID

Intermountain Healing Hearts
Intermountain Healing Hearts (IHH), a new support group formed in September, 2007 for families of children or adults with congenital heart defects (CHD’s) and heart disease. Most of our members live in the Intermountain West (Idaho, Nevada, Wyoming, Montana, and Utah) and are seen through the cardiology clinic located in Primary Children’s Medical Center (PCMC) in Salt Lake City, Utah. Intermountain Healing Hearts offer resources and a caring support network as families find answers and move forward to find healing and hope.

IL

Big Dreams for Little Hearts
A pediatric cardiology support group--including parents and medical professionals--that provides support, education, and hope to families whose lives have been affected by pediatric heart disease. The group works in connection with the nationwide support groups Mended Hearts and Mended Little Hearts.

IN

Our Hearts

IA

/Mended /Little/ Hearts/Heart-To-Heart, Iowa
The Heart-to-Heart Support Group is a support group for parents/families of children with heart defects and heart disease, dedicated to inspiring hope in those who care for the littlest heart patients of all. Mended Little Hearts, Heart-to-Heart offers resources and a caring support network as families find answers and move forward to find healing and hope.

KS

Congenital Heart Defect Families Association
CHD Families Association is a not-for-profit organization working to bring comfort and support to Kansas City area families affected by congenital heart defects.

Families Together Inc
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.

KY

KENTUCKIANA LEFT HEARTS This website it dedicated to all of the other HLHS babies & families out there who have a child with a heart defect, has had a child with a defect, or know someone who has been affected by one. We are definately not doctors but share the experiences we have had and what others have been through. Information changes daily but we try to keep up the most current information available. God bless each and every one of you.

LA

It's my Heart /Louisiana It’s My Heart’s mission is to provide support, spread awareness, educate and advocate for those affected by Acquired and Congenital Heart Defects by creating alliances with fellow families, hospitals, support groups, and the community.

ME

MD

MA

Massachusetts Heart Coalition - Partners at Heart
The Massachusetts Heart Coalition was formed to eradicate congenital heart defects. We will accomplish our goal by:

  • raising the public's awareness about the number one birth defect (CHDs).
  • drawing attention by speaking publicly about CHDs
  • connecting individuals and families coping with CHDs with resources.
  • advocating to support further research and focusing legislative attention on CHD-related issues.

It's my Heart / Boston
It’s My Heart provides strength and support for those affected by Heart Defects. It’s My Heart exists to provide support to and advocating for those affected by Acquired and Congenital Heart Defects. Through awareness, resources and education, It’s My Heart creates alliances and networks among families, groups, hospitals, and the community.

MI

MN

MS

MO

St. Louis Children's Hospital: Heart to Heart
An organization dedicated to the support and education of families dealing with congenital heart disease.

MT

Intermountain Healing Hearts
Intermountain Healing Hearts (IHH), a new support group formed in September, 2007 for families of children or adults with congenital heart defects (CHD’s) and heart disease. Most of our members live in the Intermountain West (Idaho, Nevada, Wyoming, Montana, and Utah) and are seen through the cardiology clinic located in Primary Children’s Medical Center (PCMC) in Salt Lake City, Utah. Intermountain Healing Hearts offer resources and a caring support network as families find answers and move forward to find healing and hope.

Parents, Let's Unite for Kids
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.

NC

Triangle Mended Little Hearts - Durham, North Carolina
Triangle Mended Little Hearts, is a new support program for caregivers of children with heart defects and heart disease. We are dedicated to inspiring hope in those who care for the littlest heart patients of all.

Levine Cardiac Kidsis a group that supports children with CHDs and their families. We are located in Charlotte, North Carolina and primarily serve families within a radius of about 100 miles in both NC & SC. We were established in April 2007 as simply a group of parents eager to gain/give support to other families facing a CHD diagnosis. Since that time, we have grown immensely -- with a membership of over 105 families to date. We are a VERY active group, holding monthly "gatherings" that are either fun/social activities to build bonds and friendships among the kids and families or casual meetings in which a guest speaker is invited to speak to a CHD-related topic and one of our families shares their CHD heart journey with the group.

NE

The Midwest Heart Connection

Midwest Heart Connection is a group designed to provide information, resources, and support to individuals with congenital heart disease (CHD) and their families. We primarily serve Nebraska and the surrounding areas.

NV

Intermountain Healing Hearts
Intermountain Healing Hearts (IHH), a new support group formed in September, 2007 for families of children or adults with congenital heart defects (CHD’s) and heart disease. Most of our members live in the Intermountain West (Idaho, Nevada, Wyoming, Montana, and Utah) and are seen through the cardiology clinic located in Primary Children’s Medical Center (PCMC) in Salt Lake City, Utah. Intermountain Healing Hearts offer resources and a caring support network as families find answers and move forward to find healing and hope.

NH

Little Hearts
Little Hearts, Inc. is a national organization providing support, education, resources, networking, and hope to families affected by congenital heart defects. Membership consists of families nationwide who have or are expecting a child with a congenital heart defect.
Our mission is to offer support, education and hope to families affected by congenital heart defects through our support services and to promote public awareness for this #1 birth defect.

NJ

It's My Heart - New Jersey
Chapters of It's My Heart are in both Northern and Southern New Jersey.

Little Hearts
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.

NM

Parents Reaching Out
Parents Reaching Out is a network of programs woven together to meet the ever changing needs of New Mexico families. We offer workshops and materials designed for families. We provide opportunities for connecting with other parents and resources in communities across our state. Our mission guides what we do to enhance outcomes for children and their families and build strong partnerships with the systems that touch their lives.

NY

Mend-A-Heart
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.

Little Hearts
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 - Cleveland
It's My Heart's mission is to provide support, spread awareness, educate and advocate for those affected by Acquired and Congenital Heart Defects by creating alliances with fellow families, hospitals, support groups, and the community.

Mended /Little/ Hearts/ - Ohio
Mended Little Hearts, a support program for parents of children with heart defects and heart disease, is dedicated to inspiring hope in those who care for the littlest heart patients of all. Mended Little Hearts offers resources and a caring support network as families find answers and move forward to find healing and hope.

OK

OR

PA

Hershey Hearts
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.

Littlehearts (North Central PA)
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.

Mended /Little/ Hearts/Southeastern Pennsylvania
Mended Little Hearts offers resources and a caring support network as families find answers and move forward to find healing and hope.

RI Helping Hands, Healing Hearts
Our mission is to offer emotional support, information and education for the families of children and adults living with congenital heart defects. In addition, we will spread awareness about the prevalence of the #1 birth defect by educating the public about the issues these families live with on a daily basis. We will also support CHD research, and advocate for our families by creating relationships with fellow families, hospitals, support groups and the community.

SC

Family Connection
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
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.

SD

South Dakota Parent Connection
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.

Black Hills Mended Hearts
Family members, caregivers, and friends of individuals who have experienced heart disease and/or surgery join with those individuals as a network of caring individuals to encourage and support one another, as well as those newly facing these challenges.

TN

Saving Little Hearts
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.

TX

Heart to Heart
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.

Milagros (Miracles)
Milagros is a nonprofit organization created to provide support for families in Central Texas affected by Congenital Heart Defects. It is our mission to spread awareness, raise funds for research and prevention, and to educate the community.

It's My Heart
It’s My Heart provides strength and support for those affected by Heart Defects. It’s My Heart exists to provide support to and advocating for those affected by Acquired and Congenital Heart Defects. Through awareness, resources and education, It’s My Heart creates alliances and networks among families, groups, hospitals, and the community.
There are It's My Heart Chapters in Austin, Ft. Worth and Houston

UT

Intermountain Healing Hearts
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.

VT

VA

Mended /Little/ Hearts of Richmond, Virginia
For families with children who live with heart defects and disease, Mended Little Hearts of Central Virginia is a support network providing education, advocacy, awareness, and outreach.

WA

WV

WI

Kids With Heart
Kids With Heart (KWH) is a Congenital Heart Defect support group which offers support to families of children with congenital heart defects.

Lefthearts
Left Hearts is a group for families with Children born with ANY congenital heart defect.

Mended Little Hearts- Fox Valley
"Little Hearts Hold Big Hopes"
www.helpforlittlehearts.org
www.mendedlittlehearts.org

WY

Intermountain Healing Hearts
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.

Parent Information Center
Parent Information Center (PIC), is a statewide parent center for families of children with disabilities. PIC provides information, support and referrals to families on their rights and responsibilities under the special education law IDEA, the Individuals with Disabilities Education Act. Along with the Parent Education Network (PEN) the Wyoming Parent Information and Resource Center (PIRC), PIC helps families of children with disabilities to understand the accountability and assessment systems of No Child Left Behind, and how they align with special education supports and services to increase students with disabilities potential and achievement.