Spina Bifida Resources

Links to websites of groups that study or provide information about spina bifida.

General Information on Spina Bifida

Services, Resources, and Support

Spina Bifida Association

https://www.spinabifidaassociation.org/ external link
The Spina Bifida Association (SBA) is the only national voluntary health agency solely dedicated to enhancing the lives of those with spina bifida and those whose lives are touched by this challenging congenital anomaly. Through its network of chapters, SBA has a presence in more than 125 communities nationwide. SBA’s National Resource Center on Spina Bifida provides adults with spina bifida and parents and caregivers of children with spina bifida referrals to clinics, as well as information on healthcare, education, employment, benefits, and other topics.

American College of Medical Genetics Clinic Services Search Engine

https://www.acmg.net/ACMG/Genetic_Services_Directory_Search.aspx external link
The American College of Medical Genetics Clinics Database is a service for individuals and families who wish to locate a genetics center for counseling and/or testing for genetic diseases and conditions. The database contains the locations of genetics clinics that have requested to be listed.

National Health Care Transition Center

https://www.gottransition.org/ external link
The National Health Care Transition Center is a resource for healthcare professionals, families, youth, and state policy makers focusing on young adults’ transition from pediatric to adult healthcare, especially youth with special healthcare needs. Resources include fact sheets, videos, workbooks, lists of organizations, and guidance for obtaining care, selecting providers, communicating with doctors, and understanding health policies.

Catalyst Center

https://ciswh.org/project-/the-catalyst-center/ external link
The Catalyst Center website provides policy makers and advocates with information to help improve the coverage and financing of care for children and youth with special healthcare needs. Resources include publications, state-specific financing strategies and statistical data on health coverage and financing, and stories that illustrate the kinds of financial burdens faced by these young people and their families.

Family Voices

https://www.familyvoices.org external link
Family Voices supports and promotes family-centered care for the approximately 10.2 million children in the United States with special healthcare needs and/or disabilities. Its national network provides these young people and their families with data and tools to make informed care decisions, to advocate for improved public and private policies, and to build partnerships among professionals and other families.

Genetic Alliance

https://geneticalliance.org/ external link
Genetic Alliance builds partnerships and online communities among disease-specific advocacy organizations, universities, companies, government agencies, policy organizations, and other stakeholders to share data and advocate for health-related genetic research. Through its network of thousands of organizations, the Genetic Alliance helps the rapid and effective translation of research into accessible technologies and services that improve human health.

Leadership in Family/Professional Partnerships (LFPP)

https://familyvoices.org/lfpp/ external link
LFPP promotes families as partners in the decision-making of healthcare for children and youth with special healthcare needs (CYSHCN) at all levels of care. This effort connects families with technical assistance through Family-to-Family (F2F) programs external link in all States and the District of Columbia. F2Fs are uniquely able to help families because they are staffed by family members who have first-hand experience navigating the maze of healthcare services and programs for CYSHCN. This intimate understanding of the issues that families face make F2F staff exceptionally qualified to help families navigate health systems and make informed decisions. F2F HICs provide support, information, resources, and training around health issues.

Please note: Links to organizations and information included on this page do not indicate endorsement from NICHD, NIH, or HHS.

Information about NICHD-supported research networks, studies, and projects related to spina bifida can be found at the following organizations:

  • Congenital Anomalies Research Group: The Congenital Anomalies Research Group is a multicenter, multidisciplinary group led by the NICHD to investigate the etiology of congenital anomalies, particularly neural tube defects (NTDs). It is supported by the NICHD Division of Population Health Research (DiPHR). The collaborating institutions are the NICHD; the National Human Genome Research Institute; the Health Research Board of Ireland; and the Department of Biochemistry, Trinity College, Dublin.

Please note: Links to organizations and information included on this page do not indicate endorsement from NICHD, NIH, or HHS.

top of pageBACK TO TOP