Spina Bifida: For Patients and Consumers

General Information on Spina Bifida

Services, Resources, and Support

Spina Bifida Association
http://www.spinabifidaassociation.org External Web Site Policy
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 birth defect. 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 health care, education, employment, benefits, and other topics.

American College of Medical Genetics Clinic Services Search Engine
http://www.acmg.net/GIS/ External Web Site Policy
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
http://www.gottransition.org/ External Web Site Policy
The National Health Care Transition Center is a resource for health care professionals, families, youth, and state policy makers focusing on young adults’ transition from pediatric to adult health care, especially youth with special health care 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
http://hdwg.org/catalyst/ External Web Site Policy
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 health care 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 Web Site Policy
Family Voices supports and promotes family-centered care for the approximately 10.2 million children in the United States with special health care 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
http://www.geneticalliance.org External Web Site Policy
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.

National Center for Family/Professional Partnerships
http://familyvoices.org/ncfpp/ External Web Site Policy
The National Center for Family / Professional Partnerships (NCFPP) promotes families as partners in the decision-making of healthcare for children and youth with special health care needs (CYSHCN) at all levels of care and is staffed by family leaders who have children, youth or adults with special health care needs and partner with the professionals who serve them. This National Center provides technical assistance to Family-to-Family health Information Centers (F2F HICs) that are in all States and the District of Columbia. F2F HICs are uniquely able to help families because they are staffed by family members who have first-hand experience navigating the maze of health care 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. Some F2F HICs are independent nonprofits; others are part of collaborative nonprofit organizations or state agencies. All F2F HICs have a strong commitment to and expertise about CYSHCN. The Center's website provides access to each of these centers. Use the above link to also see "Friday's Child" Newsletter and resources for families Each Center has its own website but their main products and resources are on this site as well.

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

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