Genome Resource Center.

American College of Medical Genetics and Genomics (ACMG) – Find a Genetics Clinic Directory

Search a database for genetics clinics across the United States.

National Society of Genetic Counselors (NSGC) – Find a Genetic Counselor

Search a directory for over 3,300 genetic counselors across the United States.

Baby's First Test

Families can find information on standard newborn screening.

Center for Parent Information and Resources (CPIR)

A national “hub” for the network of Parent Centers serving families of children with disabilities.

ClinicalTrials.gov

An organized, searchable list of clinical research studies from the United States and around the world, including studies testing drugs, devices, and treatments, as well as studies that collect health information without providing treatment.

Expecting Health Newborn Screening Family Education Program

Families can access resources and videos, and connect with other families impacted by newborn screening.

Family Voices

A support network that connects families with children and youth with special health care needs or disabilities.

Genetic Alliance

A health advocacy organization that connects individuals and families with reliable information and resources for thousands of health conditions, including support groups, advocacy organizations, research studies, and clinical trials.

Genetic and Rare Diseases Information Center (GARD)

A federally funded resource center that helps patients and families find easy-to-understand, reliable information about genetic and rare diseases.

Global Genes

A nonprofit organization dedicated to eliminating the burdens and challenges of rare diseases for patients, their families, and disease communities globally.

National Maternal Mental Health Hotline

‍1-833-TLC-MAMA (1-833-852-6262) ‍Pregnant or just had a baby?The National Maternal Mental Health Hotline is free, confidential, and available 24/7 in English and Spanish.

National Organization for Rare Disorders (NORD)

A nonprofit that provides reliable information, patient advocacy, and support resources for people affected by rare diseases.

Patient Advocate Foundation

A nonprofit organization that provides professional case management services to Americans with chronic, life-threatening, and debilitating illnesses.

Parent to Parent USA

A national network of parent-to-parent programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs.

ASK Resource Center

A parent training, information, and advocacy center for families of children with special needs across the state of Iowa.

The Heartland Regional Genetics Network (HRGN)

A regional network that connects families in the central U.S. to genetic services, education, and support resources for genetic conditions.

Iowa Family Support Network (IFSN)

A statewide system that provides information and resources to expecting families or families with young children and the professionals that serve them.

Early Childhood Iowa, through Iowa Department of Health and Human Services

A statewide initiative housed within the Iowa Department of Health and Human Services that unites public and private agencies, organizations, and stakeholders under one common vision: “Every child, beginning at birth, will be healthy and successful.”

Medical Genetics and Genomics Services in Iowa

Iowa's only comprehensive medical genetics and genomics program, providing specialized genetic evaluation, testing, counseling, and ongoing management for individuals with genetic conditions.

Birth and Maternal Care

A statewide program that works to ensure optimal health for pregnant, birthing, and postpartum mothers.

Community Health Team at Every Step

Free services that connect Iowa children and families with health care, parenting support, education, and community resources.

Follow Along Program

The Follow Along Program is a free program offered through local MN public health departments that helps families track their child’s development and connect to support if needed.

Help Me Grow

Help Me Grow provides resources for families to understand developmental milestones and learn if there are concerns.

Help Me Connect

Minnesota Help Me Connect helps expectant families, families with young children birth to 8 years of age, and those working with families find and connect to services in their local communities that support healthy child development and family well-being.

Minnesota Hands and Voices

Minnesota Hands & Voices provides information, support, and referral to families at any point in their journey with their child who is deaf or hard of hearing, but especially for those families just starting on their path.

PACER Center

Minneapolis-based nonprofit working to improve educational opportunities and enhance the quality of life for children and young adults with disabilities and their families.

Family Voices of Minnesota

Strong, connected families in Minnesota advocating to ensure the best health care for children and youth with special health care needs.

Minnesota Rare Disease Advisory Council

An executive branch, non-cabinet agency tasked with advocating for improved care for Minnesotans living with a rare disease; a resource for individuals, families, caregivers, and support and advocacy groups.

Newborn Screening Materials and Resources

MN Department of Health resource directory for families and providers who wish to learn more about newborn screening and the disorders on the newborn screening panel.

Children and Youth with Special Health Needs (CYSHN)

A section within the MN Department of Health that provides resources and champions the health and well-being of people of all ages living in Minnesota with special health needs and disabilities.

Pregnancy & Postpartum Support Minnesota

A volunteer-led organization paving the way for perinatal mental health and setting the standard for competent perinatal care in Minnesota.

Parent to Parent of NYS

A statewide nonprofit organization established to support and connect families of individuals with special needs.

Rare Diseases – NYS Department of Health

A compiled list of resources on research, diagnosis, treatment, coverage options, and education relating to rare diseases from the NYS Department of Health.

Maternity Hospital Quality Improvement Network

A government initiative working with NYC maternity hospitals to prevent and reduce disparities in maternal mortality and severe maternal morbidity.

Perinatal and Early Childhood Mental Health Network

Operates five mental health clinics that provide expert mental health services to pregnant and postpartum people, children under 5, and their families.

Family Support – Public Health Solutions

New York City's largest public health nonprofit, offering many different free services to help NYC children, parents, and pregnant moms.

Children and Youth With Special Health Care Needs

A government program connecting families to health services and community resources for children and young adults with special needs.

New York State Rare Disease Collaborative

An initiative helping people with rare diseases and their caregivers advocate at the state level for better research, treatment, access, and support.

Oregon Family-to-Family Health Information Center

A resource hub supporting families and caregivers of children with special health needs when navigating complex health care systems.

Información para padres: Centro de Información de Salud Familia a Familia de Oregon (OR F2F HIC)

El Centro de Información de Salud de Familia a Familia de Oregon apoya a las familias y cuidadores de niños con necesidades especiales de salud navegar sistemas de atención médica complejos.

Family and Child Health – Oregon Health Authority

A section of the state's health department working to address health promotion issues across the lifespan of individuals and families.

Family Connects Oregon

Oregon's only universal nurse home visiting program for all kinds of families and caregivers, providing personalized support for newborns and family well-being. Available in English, Español (Spanish), العربية (Arabic), Tiếng Việt (Vietnamese), 中文（简体）Chinese (Simplified), Soomaaliga (Somali).

Oregon Center for Children & Youth with Special Health Needs

Oregon's public health agency for children and youth with special health care needs.

Oregon Parenting Education Collaborative (OPEC)

A statewide parenting education network for families, parenting education professionals, and partners.

Oregon Family Support Network

A statewide organization that provides family education, advocacy, and support while working with communities and state leaders to improve access to services across Oregon.

Oregon Consortium of Family Networks

A statewide collaborative that connects, supports, and advocates for families of diverse backgrounds by helping them access resources tailored to their unique needs.

APNI, Inc. (Apoyo a Padres de Niños con Impedimentos)

A nonprofit organization providing services for families of children and young people with disabilities and service providers in Puerto Rico.

The Puerto Rico Family-to-Family Center

A parent-run center providing support, information, resources, and advocacy for families of children and youth with special health care needs or intellectual and developmental disabilities.

Centro de Enfermedades Hereditarias y Programa de Cernimiento Neonatal de PR

Puerto Rico's newborn screening program, providing early detection, follow-up, and resources for hereditary conditions.

Comienzo Saludable

A free program that connects, educates, and supports mothers, fathers, and families before, during, and up to 18 months after pregnancy.

South Carolina Newborn Screening Program

Official website of the SC Newborn Screening Program

Medical Genetics and Genomics at MUSC

Genetics clinic at the Medical University of South Carolina, providing genetics care for children.

Family Connection of South Carolina

Helps families of children with disabilities and special health care needs connect with specialized providers, parent-to-parent support, and community resources.

Children's Trust of South Carolina – Family Resource Centers

Community-based centers where families can access support services and information, such as parenting education, family counseling, caregiver support, and community resource navigation.

SC Thrive

A nonprofit helping South Carolinians access Medicaid, CHIP, SNAP, and other public benefits through free enrollment assistance and resource navigation.

Healthy Connections Medicaid

South Carolina's Medicaid program, helping eligible residents access health coverage through enrollment, eligibility information, and TEFRA/Katie Beckett resources.

BabyNet SC

South Carolina's early intervention program for infants and toddlers from birth to age 3 with developmental delays or disabilities, providing developmental evaluations, service coordination, and therapy services based on each child's needs.

Greenwood Genetic Center

Long-standing partnership with the SC Department of Disabilities and Special Needs to provide genetics evaluations, counseling, and diagnostic testing at regional offices (Greenwood, Greenville, Columbia, Charleston, Florence).

Postpartum Newborn Home Visits

A free, no-cost in-home or virtual nurse visit for new moms and their babies.

Maternal Health – South Carolina Hospital Association

A directory of South Carolina Hospital Association's programs promoting maternal health.

South Carolina Rare

A safe space for all members of the rare disease community to find resources and have opportunities to connect with fellow community members.

South Carolina Rare Disease Advisory Council

South Carolina's advisory body focusing on research, diagnosis, treatment, and education regarding rare diseases and their economic impact on the state.

Texas Parent to Parent

Provides support, information, and education for families of children and adults with disabilities, chronic and mental health conditions, and other health care needs.

Maternal and Child Health – Texas Department of State Health Services

A section within the Texas Department of State Health Services that aims to improve the health of women of childbearing age, adolescents, children, infants, and children and youth with special health care needs.

Genetics Resources in Texas – Texas Society of Genetic Counselors

A directory of Texas genetics resources, including educational information, research organizations, support groups, and state, regional, and local services.

Genetic Services Special Assistance

A directory of financial assistance resources for Texans with genetic conditions, including programs that help cover health care, medications, and family support services.

Texas Community Health Outreach – Children's Defense Fund

A nonprofit that helps Texas families enroll in CHIP, Children's Medicaid, SNAP, and other public benefits through free outreach, education, and enrollment assistance.