Additional Resources


The American College of Medical Genetics and Genomics is an organization composed of health care professionals committed to the practice of medical genetics. 

The American Academy of Pediatrics is guided by its mission to ensure the health and well-being of all children.

The American College of Obstetrics and Gynecology is the premier professional organization for obstetrician-gynecologists, working to improve and strengthen women's health care around the world with programs dedicated to global health, social issues, advocacy, and more.

Birth Defect Research for Children, Inc., is a non-profit organization that provides parents and expectant parents with information about birth defects and support services for their children. 

CDC works to identify causes of birth defects, find opportunities to prevent them, and improve the health of those living with birth defects. 

The Children's Heart Foundation is the leading organization dedicated to funding congenital heart defect (CHD) research. 

The Children’s Relief Fund recognizes that every person, no matter what their disability, has a place in our society. Their goal is to provide the Special Needs Children in their area with the appropriate tools to live productive lives in their community. 

The Office of Women’s Health coordinates women's health efforts across the U.S. Department of Health and Human Services and addresses critical women's health issues by informing and advancing policies, educating health care professionals and consumers, and supporting innovative programs.

Healthfinder provides trusted information to help your family stay healthy.

Mended Little Hearts aims to inspire hope and improve the quality of life of heart patients and their families through ongoing peer-to-peer support, education, and advocacy.

March of Dimes is a nonprofit organization committed to ending preventable maternal health risks and death, ending preventable preterm birth and infant death and closing the health equity gap for all families. 

Mother to Baby is the nation’s leading authority and most trusted source of evidence-based information on the safety of medications and other exposures during pregnancy and while breastfeeding. 

The NBDPN is a volunteer-based organization that addresses the issues of birth defects surveillance, research, and prevention under one umbrella by maintaining a national network of state and population-based birth defects programs. 

The National Organization for Rare Disorders (NORD) is a nonprofit voluntary health agency that serves as a clearinghouse for information on rare disorders. 

The Pediatric Orthopedic Society of North America (POSNA) is a not-for-profit professional organization of over 1400 surgeons, physicians, and allied health members passionately dedicated to advancing musculoskeletal care for children and adolescents through education, research, quality, safety and value initiatives, advocacy, and global outreach to children in underserved areas. 

Tennessee Disability Pathfinder (“Pathfinder”) helps people with disabilities, their family members, educators, and other professionals find and access resources, support, and services available to meet their needs.

The American Cleft Palate Craniofacial Association focuses on advancing patient care and research for individuals affected with cleft lip, cleft palate and other craniofacial anomalies.

According to the American Heart Association, Congenital Heart Defects are abnormalities of the heart structure or function that are present at birth.

The mission of the America Syringomyelia and Chiara Alliance Project (ASAP) is to improve the lives of persons affected by Syringomyelia, Chiari Malformation and related disorders while seeking a cure.

Children’s Craniofacial Association is a national nonprofit organization that addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions.

The main goals of the Esophageal Atresia Global Support Groups are to help EA patients and health professionals share their knowledge and experience, promote awareness of the condition across the world and support worldwide research and collation of information concerning the treatment and care of people born with esophageal atresia.

FASD United supports individuals and families living with FASD through referrals, advocacy, training, information dissemination, and a wide range of diverse initiatives and resources.

Global Gastroschisis Foundation was created to support gastroschisis research, awareness, and support for patients and families affected by gastroschisis.

The mission of HLAA is to open the world of communication to people with hearing loss by providing information, education, support, and advocacy. 

ICAN provides referrals to genetic counseling, support groups, and other services and promotes professional and patient education, as well as a variety of educational and support materials.

The Incredible Teddy Foundation supports families affected by congenital diaphragmatic hernia (CDH) through education, building awareness, and direct financial grants. 

International Child Amputee Network (I-CAN), is dedicated to promoting education, support, information, and empowerment to traumatic and congenital limb different children and their families. 

The Limbless Association offer information, advice and support for amputees, their family and friends and professionals. 

The MDA aims to relentlessly pursue their promise to transform the lives of people living with muscular dystrophy, ALS, and related neuromuscular diseases, through research, care and advocacy. 

The National Association for Down Syndrome supports all persons with Down syndrome in achieving their full potential. 

The National Down Syndrome Society (NDSS) envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.

The mission of the Spina Bifida Association is to build a better and brighter future for all those impacted by Spina Bifida through education, advocacy, research, and support.

The Spina Bifida Resource Network (SBRN) provides services and programs to children, adults and families living with spina bifida and other disabilities in NJ and beyond. 

United Cerebral Palsy of Middle Tennessee serves Tennessee with programs targeted at our mission to advance the independence and full citizenship of people with disabilities.