Founders and Advisory Board

Congenital Heart Defect Resources

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

Click on one of the catagories below to go directly to that section.

Medical Information

• - for Professionals
• - for Parents and Others Interested in CHD Information

Suppport Groups

• - for Adults with Congenital Heart Defects
• - for All Ages with CHDs
• - Bereavement Support Groups

CHD Foundations

Other CHD related sites

Listservs and Webrings

Camps

Transplant Information

Medical Transport - Air Ambulance, etc.

Care Notebook
The Care Notebook and Care Organizer are tools for families who have children with special health care needs. Families use Care Notebooks to keep track of important information about their child's health and care. This makes it easier to find and share key information with their child's care team.

For Anesthesiologists and CRNAs

Anesthesiology Online
Anesthesiologists and Clinical Registered Nurse Anesthetists would benefit from knowing about how they can get CME credit online at this site.

Anesthetic Management of Pediatric Patients with Hypoplastic Left Heart Syndrome for Non-Cardiac Surgery
by Frank A. Jaworski, BSN, RN

Continuing Education Information for Doctors and Nurses:

The American Association of Critical Care Nurses
This organization provides many articles and CEUs online.

Cardiac Development - Nursing CEU
This animated lesson helps one understand what some common cardiac malformations look like.

Pediatric and Neonatal Resources
Nurses can earn CEUs in a variety of areas. There are also links to other nursing related sites.

Continuing Education Information for Doctors:

Doctor's Guide - Congress Resource Centre

Ed Credits Continuing Education Credits for medical professionals.
Ed Credits is designed to help professionals with their busy and demanding schedules. We offer self-paced, high quality on-line courses which can be taken from any on-line computer.

Healthstream
HealthStream, Inc., based in Nashville, TN, is the leading provider of e-learning solutions to the healthcare industry.

Children's Healthcare of Atlanta
The Continuing Education Department at Children's designs and coordinates conferences and workshops for healthcare professionals.

General CHD Information For All Medical Professionals:

Echo UK - the Tiny Tickers Charity
Our aims are to improve the understanding, early detection and treatment of cardiovascular disease in babies and mothers through research, training and education. echo uk is an independent, international charity, led by concerned parents and supported by medical experts in the UK and Europe.

European Society of Cardiology
For doctors, nurses and others in the field of cardiology abroad, this site might be of interest: It features scientific information, public information and information about upcoming cardiology conferences.

FreeBooks4Doctors
Over the next few years, many important medical textbooks will be available online, free and in full-text. The unrestricted access to scientific knowledge will have a major impact on medical practice. FreeBooks4Doctors is dedicated to the promotion of free access to medical books over the Internet.

The Heart Institute for Children
The Heart Institute for Children (THIC), founded in 1987, is dedicated to clinical excellence, education and research in the field of congenital and acquired heart disease in children and young adults. Clinical care includes the latest and the most advanced technology. Research is directed towards clinical cardiology as well as basic molecular biology.

Hypoplastic Right Heart Syndrome
A page by The Heart Institute for Children

Types of Congenital Heart Defects, with diagrams.
The Royal Children's Hospital Cardiology Department in Melbourne, Australia has a terrific site with diagrams of heart defects, a Frequently Asked Questions page, and much more.

Medical Breakthroughs -- Medical News and Health Information
This is the latest news covering many different facets of medicine including children's health and cardiovascular health.

Medical Matrix
Medical Matrix is a free directory of selected medical sites on the Internet. Each site listing has been carefully evaluated by reviewers from our panel of physicians and medical librarians. Medical Matrix lists only those sites that meet our criteria for information quality and site usability, with an emphasis on usefulness to healthcare practitioners.

PediHeart Website
This is the PediHeart webpage run by Dr. Hennein at Loyola.

SADS Foundation (Sudden Arrhythmia Death Syndromes)
Our Mission is to save the lives of children and young adults who are genetically predisposed or otherwise susceptible to sudden death due to cardiac arrhythmia and to provide education and support to families and the medical community who are dealing with these disorders. The SADS Foundation is dedicated to providing information, assistance & hope.

General CHD Information For Doctors:

American College of Cardiology
Helping Cardiovascular Professionals Learn, Advance, Heal.

Cardiothoracic Surgery Network

E-Medicine: Pediatric Cardiology
Pediatrics: Cardiac Disease and Critical Care Medicine Articles

Heart Surgery Forum
Official Publication of the International Society for Minimally Invasive Cardiac Surgery

PubMed database for medical literature
Links to journal articles related to congenital heart defects.

General CHD Information

Cove Point Foundation - Congenital Heart Disease
Our site is free to the public, is supported by a grant from the Cove Point Foundation, and has been developed under the direction of Allen D. Everett, MD of the Helen B. Taussig Children's Heart Center, Johns Hopkins University.

The Mayo Clinic has a slide show with good illustrations of the most common types of CHD. You can view it HERE

The Hospital for Sick Children in Toronto, Canada has developed a Web site that explains and illustrates how the body works using colourful animations and easy-to-read text. The site is named Child Physiology: How the Body Works and it can be seen at http://www.sickkids.ca/childphysiology/ .
Currently the site covers the normal function of several body organs and systems. In particular, there are sections about the Heart and Genetics which would be especially pertinent to the users of CongenitalHeartDefects.com .

Baby Hearts Press
provides resources to the congenital heart defect community that foster hope and healing. The Heart of a Mother, The Heart of a Father, HLHS: A Handbook for Parents, My Brother Needs an Operation, and more.

British Heart Foundation
This is the British version of the American Heart Association.

Cardiac Disease in Children
The American Heart Association's information on CHDs.

Congenital Heart Defects in Children Fact Sheet
From the American Heart Association

DiseasesConditions.com
Directory for all diseases and conditions information - cancer, diabetes, mental health, allergies, depression, anxiety and more.

Focus: Families of Children Under Stress
FOCUS offers emotional, informational, and physical support to families with children with disabilities or ongoing medical needs.

Fontan operation - Pediatric heart surgeon helps you understand the Fontan Operation
Easy-to-understand info on the Fontan operation from a specialist pediatric heart surgeon. "Looking for reliable info about the Fontan operation? I've been writing about the Fontan since 1996"

Heart1.com
Heart1.com offers comprehensive cardiac care information, accomplished through news features, technology reports, searchable databases of the most prevalent venous conditions and possible treatments, as well as interactive tools where patients can tell their stories and ask experts questions.

How the Heart Works: The Heart House
Great site with descriptions and pictures of how the heart works from the Children's Heart Institute.

March of Dimes: Congenital Heart Defects Information

Heart Disease/Cardiology
This is the About.com site on Cardiology. Lots of good links.

HLHS, SADS and VCFS Information

Baby Hearts Press
provides resources to the congenital heart defect community that foster hope and healing. The Heart of a Mother, The Heart of a Father, HLHS: A Handbook for Parents, My Brother Needs an Operation, and more.

Hypoplastic Left Heart Syndrome (HLHS) Information Page
This site was designed to help parents of babies diagnosed with Hypoplastic Left Heart Syndrome (HLHS).

SADS Foundation (Sudden Arrhythmia Death Syndromes)
Our Mission is to save the lives of children and young adults who are genetically predisposed or otherwise susceptible to sudden death due to cardiac arrhythmia and to provide education and support to families and the medical community who are dealing with these disorders. The SADS Foundation is dedicated to providing information, assistance and hope.

Velo-Cardio-Facial Syndrome
The Velo-Cardio-Facial Syndrome Foundation is an international not-for-profit, self-help organization dedicated to providing support and information to individuals who are affected by Velo-Cardio-Facial syndrome, their families, physicians and other practitioners. The Foundation is independent of -- and not affiliated with -- any particular institution.

CHD and Learning Disabilities

We have set up a page with information on Learning Disabilities associated with CHDs. Please click HERE to visit this page.

Medical Information Sites

The Cardiomyopathy Association
This site is designed to provide information on the main forms of the heart muscle disease known as Cardiomyopathy.

The Children's Cardiomyopathy Foundation (C.C.F.)
is dedicated to supporting scientific and medical research specific to pediatric cardiomyopathy. The Foundation also works with physicians and affected families to promote education, awareness and advocacy. C.C.F. has a medical advisory board of geneticists and pediatric cardiologists who are all acknowledged leaders in the field of pediatric cardiomyopathy.
Children's Cardiomyopathy Foundation
P.O. Box 547
Tenafly, NJ 07670
Tel: 201-227-7016 (9:00-5:00pm EST)
Email: mailto:info@childrenscardiomyopathy.org

Adult Congenital Heart Disease Center
Successful cardiac surgery in infants and children during the 1960s and 1970s has resulted in a rapidly growing population of adults with congenital heart disease. Some of these patients have cardiac problems which are not typically seen by adult cardiologists. The Joan And Michael Schneeweiss Center for Adult Congenital Heart Disease at New York Presbyterian Hospital was developed to serve the unique needs of this population. Highly specialized care is provided by a team of physicians specifically interested in the problems of adults with congenital heart disease.

The Heart Center Encyclopedia, Children's Hospital of Cincinatti
We, at The Heart Center, believe that supplying information is a vital component of our dedication to providing the highest level of care to patients and support to their families and their physicians. We have compiled this online encyclopedia in order to provide a comprehensive source of easily accessible information about the disorders that may affect a child's heart and the options that are available to treat those conditions.

Medical Breakthroughs -- Medical News and Health Informaion
This is the latest news covering many different facets of medicine including children's health and cardiovascular health.

PediHeart Website
This is the PediHeart webpage run by Dr. Hennein at Loyola.

Bereaved Parents of the USA
Bereaved Parents of the USA (BP/USA) is a nationwide organization designed to aid and support bereaved parents and their families who are struggling to survive their grief after the death of a child.

The Compassionate Friends
The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive.

The M.I.S.S. Foundation
We are a nonprofit 501(c)3 international organization providing immediate and ongoing support to grieving families, helping them to empower themselves by proactive community involvement and volunteerism, and reducing infant and toddler death through research and education.

My Forever Child
offers unique memorial keepsakes, remembrance jewelry and sympathy gifts to comfort those touched by the loss of a child, no matter what age.

SHARE Pregnancy and Infant Loss Support, Inc.
SHARE is a not-for-profit nondenominational organization providing support to those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth or newborn death.

Aubrey Rose Hollenkamp Children's Trust
The Aubrey Rose Hollenkamp Children's Trust Fund will be honoring Aubrey's life by:

1. Awarding educational scholarships for children so that they can better themselves. In Aubrey's three short years, she made a positive impact on many people. These scholarships will be based on how children have made an impact on the people around them
2. Helping families with financial need because of medical expenses of their children.
3. Organizing buying toys and holiday parties to brighten the lives of sick children at our local Children's Hospital.

The Children's Cardiomyopathy Foundation (C.C.F.) is a newly formed 501 (C)(3) tax-exempt, public charity incorporated in New Jersey. C.C.F is dedicated to supporting scientific and medical research specific to pediatric cardiomyopathy. The Foundation also works with physicians and affected families to promote education, awareness and advocacy. C.C.F. has a medical advisory board of geneticists and pediatric cardiologists who are all acknowledged leaders in the field of pediatric cardiomyopathy.
Children's Cardiomyopathy Foundation
P.O. Box 547
Tenafly, NJ 07670
Tel: 201-227-7016 (9:00-5:00pm EST)
Email: info@childrenscardiomyopathy.org

Children's Heart Foundation
Founded in 1996, the mission of The Children's Heart Foundation is to raise funds to support research towards discovering the causes of and improving the methods of diagnosing, treating and preventing congenital heart defects.

Heart of a Child Foundation
The goal of the Heart of a Child Foundation is to fund research; to find the root causes of congenital heart defects and to improve the care and treatment of children born with these defects.

Heart to Heart International
Heart to Heart International, Incorporated (HTH) is a non-profit organization that is dedicated to helping children in the developing world who have congenital heart defects. The organization brings children who need surgical intervention to the United States for treatment. Heart to Heart accomplishes this by utilizing a network of participating physicians and hospitals who donate their care and services.

International Children's Heart Foundation: Children and Congenital Heart Defects
The International Children's Heart Foundation hopes to provide direct care to as many children as possible, sending medications, surgical supplies and diagnostic equipment to medical facilities around the world and helping train surgeons from developing nations in this special field, so that they ultimately can provide care for their own people.

The Sydney Mae Taylor Foundation, Inc.
The mission of the Sydney Mae Taylor Foundation is to contribute to the education and well-being of children, especially children with congenital heart defects. Specifically, the organization's purpose is to provide scholarships to children, funding for medical research, financial support to send children to summer camp, and financial backing for families who wish to attend the Compassionate Friends National Conferences.
Sydney Mae Taylor Foundation, Inc.
42 Turnbridge Drive
Lumberton, NJ 08048
609-288-6293

Boston Children's Hospital's The Experience Journal
This site is designed to promote the healthy coping of children and their families who must contend with significant heart disease. The Experience Journal is a collection of stories, pictures, and personal experiences from families about what it has been like to live with their children's heart disease. It represents the "collective wisdom" of these children and their parents as well as their health care providers. The site also includes a parent primer for children being hospitalized, a new parent manual for heart transplantation, and cardiology staff narratives.

Clinic 4 Kids
Specializing in caring for children with autism, pediatric feeding disorders, and other special needs

Medic Alert
MedicAlert is a service that protects and saves the lives of its Members by providing identification and critical information in an emergency.

My Heart Vs. the Real World
is a photo documentary volume that explores the lives of children with congenital heart disease (CHD) through striking black-and-white photographs and interviews with subjects and their families.

Pacemaker and Arrhythmia Information and Support Groups

Shadow Buddies
A Shadow Buddy is a soft, cuddly doll that has the same physical problems that your child does! This can really help when explaining treatments, etc.

Children's Hopes and Dreams
Children's Hopes and Dreams has been serving children with serious childhood illnesses since 1983. We are one of the oldest wish fulfillment organizations in the world. Our programs serve over 14,000 seriously ill children each year.

The Children's Wish Foundation
We Are Children's Wish Foundation International, and we measure our success in smiles.

The Dream Factory
The Dream Factory grants dreams to children who are between the ages of 3 and 18 years who have been diagnosed with critical or chronic illnesses.

Dream Foundation
The mission of the Dream Foundation is to enhance the quality of life for individuals and families battling terminal illnesses. The Dream Foundation is the first and only national wish-granting organization for adults ages 18-65.

Give Kids the World Village
Give Kids the World is a non-profit organization that exists only to fulfill the wishes of all children with life-threatening illnesses and their families from around the world to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids the World Village for as long as there is a need.

Make A Child Smile
Our mission is to provide emotional and financial support to families whose children suffer from chronic or life-threatening illnesses and also give those who visit the MACS site the opportunity to participate by sending mail to the children.

Make-A-Wish Foundation
We grant the wishes of children with life-threatening illnesses to enrich the human experience with hope, strength, and joy.

Starlight Children's Foundation Home Page
The entire family is affected when a child is sick and the day-to-day joys of childhood often take a back seat to the rigors of treatment and hospitalization. Starlight's six core programs are designed to restore some of the laughter and happiness that a serious illness takes away from kids and those who love them. s

Camp Del Corazon
Camp Del Corazon Inc. is a 501(c) Non-profit corporation, providing a summer camp for children with heart disease for free. All proceeds are spent entirely on the camp.

Camp Taylor
Camp Taylor, Inc. is a non-profit entirely free camp for children with heart disease. Our camp is located in beautiful Livermore, California on 138 acres of serene landscape. We offer our heart campers age 6-17 yrs. many activities including horseback riding, water sports at Lake Del Valle, 4th of July celebration, arts & crafts, campfire skits and songs, ropes course all under the direct supervision of our pediatric cardiac professionals. Our camp encourages our "heart campers" to bring a sibling along for the adventure.

FL

The Boggy Creek Gang
The Boggy Creek Gang camping experience is more than a fun-filled getaway. The gang teaches children how to better cope with the day-to-day challenges they face, and offers educational and supportive programs to parents, siblings and other family members. The lessons learned through our programs allow families to better communicate and to understand more fully the difficulties chronically ill children face. In turn, those children also learn about caring for themselves through seminars and support groups led by The Boggy Creek Gang professional staff.

GA

Camp Braveheart
The mission of Camp Braveheart is to create a positive life experience for all children with complex heart defects through a camping program that promotes: self esteem, socialization among peers, support from other families dealing with complex heart defects, and so much fun!

LA

Camp Bon Coeur
Camp "Good Heart" is a non-profit two week residential cardiac camp designed to give children with acquired or congenital heart defects an opportunity to participate in a summer camp program.

MA

The Edward J. Madden Memorial Open Hearts Camp is a camp located in the Berkshires, in western Massachusetts, for children ages 8-13 who have had, and are fully recovered from, open heart surgery or a heart transplant. The camp operates three age specific sessions, and one 'Special Hearts' session for children who have special psycho-social needs that are related to their heart surgery. The camp is free for children to attend, and has been in operation for over 40 years.

MD

Dragonfly Heart Camp
Dragonfly Heart Camp is for kids and ages 7 * 17 with Cardiac Disease and Pulmonary Hypertension. The camp is located on Maylands Eastern Shore of the Chesapeake Bay . The camp is non profit and free to all campers.

MN

Camp ODAYIN strives to provide a safe, fun, and stigma-free camp experience for children with heart disease, regardless of socioeconomic status. Our camp offers the opportunity to strengthen self-confidence, gain independence, develop life skills, and meet other young people with similar health, emotional, and social concerns. Camp Odayin's residential camps in Northern Minnesota as well as day camp and Family Camp in the Twin City metro area serves campers, ages 6 to 17.

MO

Camp Systole
The Children's Mercy Section of Cardiology, with the support of community volunteers, businesses and organizations, offers a week-long camp experience each summer especially for children with cardiac-related disorders.

The camp experience is free of charge for each participant. Activities include swimming, hiking, horse-back riding, crafts, model rocketry, and games. Additionally, there are educational sessions for the participants to learn more about cardiac disorders. Camp Systole is intended to provide a week of fun, and to allow participants to engage in rewarding activities which promote personal development.

NJ/NY

Hope with Heart
The Hope with Heart organization provides a week long camp for children with heart conditions to be able to connect with other children with similar health issues, to realize that they are not alone and to enjoy their childhood as every child should.

OH

Camp Joyful Hearts
Growing up with heart disease can be a significant physical and emotional challenge. Through Camp Joyful Hearts, we hope to help kids with heart disease overcome these challenges with a support network of kids in similar circumstances.

OK

CHAMP Camp
CHAMP (Children with Heart Abnormalities have Much Potential) Camp is a week-long camp designed to promote friendships, support networks, knowledge base, and coping skills among children with heart disorders and their siblings.

Located in northeastern Oklahoma, the Camp serves children ages 7-16 years of age as resident campers, and 4-8 years of age as day campers (shuttle transportation available to and from Tulsa). Children with heart problems ages 15 and older function as junior counselors, assisting the counselor and camping staff.

PA

Camp Victory

Heart Camp (CHOP - Penn.)

TN

Cardiac Kids Camp
The annual Cardiac Kids Camp is designed for children ages 8-18 with cardiac-related diagnoses. Campers participate in nature hikes, fishing, swimming, softball, volleyball, rope courses, crafts, track and field activities and healthy living education. Nurses, physicians, cardiovascular technologists, volunteers and former heart patients serve as counselors for the camp. Cardiac Kids Camp participants come from all over the Mid-South. The camp is held at Lakeshore United Methodist Campground in Eva, TN.

TX

Camp John Marc
sponsored by Children's Medical Center of Dallas

WV

Camp Mountain Heart

COTA (Children's Organ Transplantation Association)
The Children's Organ Transplant Association provides fundraising assistance for children needing life-saving transplants and promotes organ, marrow and tissue donation.

National Transplant Assistance Fund
http://www.transplantfund.org/
6 Bryn Mawr Avenue
P.O. Box 258
Bryn Mawr, PA, USA 19010
Telephone: (800) 642-8399 or (610) 527-5056
Fax: (610) 527-5210
e-mail: mailto:NTAF@transplantfund.org

The New England Organ Bank
New England Organ Bank
One Gateway Center
Newton, MA 02458
Phone: 800-446-NEOB
E-mail: mailto:info@neob.com

Transplant Recipients International Organization (TRIO)
TRIO is a non-profit international organization committed to improving the quality of lives touched by the miracle transplantation through support, advocacy, education, and awareness.
Transplant Recipients International Organization, Inc.
2117 L St. NW # 353
Washington, DC 20037-1524
(202) 293-0989
(800) 874-6386 Toll Free
Fax: (415) 239-8727
E-mail: TRIOIntl@aol.com

United Network for Organ Sharing
The transplant community is joined under a nationwide umbrella: The United Network for Organ Sharing (UNOS), a nonprofit charitable organization, maintains the nationwide organ transplant waiting list under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services.

World Children's Transplant Fund
The World Children's Transplant Fund (WCTF) is a unique and special organization. Our mission is to provide as many opportunities as possible for lifesaving pediatric transplant surgery to children of the world.
http://wctf.org
World Children's Transplant Fund
16000 Ventura Blvd.
Suite 103
Encino, California 91436
Telephone: (818) 905-9283
Fax: (818) 905-9315
E-mail: http://www.congenitalheartdefects.com/

Air Charity Network
provides air transportation to ambulatory patients in need of financial assistance. Air Charity Network™ (ACN) is comprised of independent member organizations identified by specific geographical service area. To locate the Air Charity Network™ organization that serves your area, call 877-621-7177.

Children's Transport for Life
manages and coordinates no-cost charitable child transport patient programs on behalf of children who need access to medical research centers and disease-specific treatment programs.
PO Box 1940
Manassas, VA 20108-0804
1-888-675-1405
1-800-296-1191
(703) 361-1792 (Fax)
childlife@aol.com

Corporate Angel Network
flies patient with 2 adults to necessary destination on a corporate jet that has empty seats available.
Westchester County Airport
Building One
White Plains, NY 10604
(914) 328-1313 (8:30-4:30 EST M-F)
info@corpangelnetwork.org

LIFELINE PILOTS
Operating for over 20 years, LifeLine Pilots has been the transportation bridge for thousands of families in need. Whether our passengers are seeking the best medical treatment or have a compassionate need, the necessity for transportation is the common factor.

Byerly Aviation Bldg. 3rd Fl.
6100 W. Dirksen Parkway
Peoria, IL 61607
1-800-822-7972

missions@lifelinepilots.org

MERCY MED FLIGHT - is a charitable air ambulance.
200 Texas Way, Hanger 23N
Fort Worth, TX 76106-2782
mmf@mercymedflight.org

MERCY MEDICAL AIRLIFT
Our mission is to facilitate a charitable means of long distance medical air transport for all medically indigent, low-income and financially vulnerable patients -- thereby ensuring equal access to distant specialized medical treatment or to appropriate facilities and settings for continuing care.
4620 Haygood Rd., Suite 8
Virginia Beach, VA 23455
1-888-675-1405
(747) 318-9175
(757) 318-9107 (Fax)
mercymed@aol.com

Miracle Flights For Kids
Founded in Green Valley, Nevada, in 1985, Miracle Flights For Kids is a nonprofit organization providing no cost air transportation for children and families to hospitals and specialized health care facilities around the country. There is no charge for any of our services. We will fly as far as needed, and as many times as necessary, to meet the needs of the families we serve.

NAVY MARINE CORPS RELIEF SOCIETY
- provides interest-free loans or grants to help with emergency needs such as emergency transportation, funeral expenses, medical/dental bills, food, rent, and utilities, and child care expenses. Also has visiting nurses performing house calls and instruction to mothers and newborns as well as gives out layettes (junior seabags) to new parents. They also have budget counseling which provides training, education, and remedial counseling.
Executive Director, Mrs. Presha Merritt
Quantico, VA 22134
(703) 640-7137

PILOTS FOR CHRIST INTERNATIONAL
- provides free air transport to individuals and groups in need of transportation for ambulatory persons who can ride in small aircraft to and from treatment and relatives who need to visit seriously ill patients.
(410) 363-8837
geoclark@juno.com

VOLUNTEER PILOTS ASSOCIATION
- provides air transport to needy people for medical treatment.
PO Box 95
Hickory, PA 15340
(724) 356-4007 (voice and Fax)