People and Organisations United for Spina Bifida and Hydrocephalus




Birth Defects Surveillance Toolkit
CDC, in collaboration with the World Health Organization and the International Clearinghouse for Birth Defects Surveillance and Research, offers a Birth Defects Surveillance Toolkit for use by low- and middle-resource countries developing or strengthening birth defects surveillance programs.
WHO Guideline At-A-Glance: Optimal Blood Folate Concentrations for the Prevention of Neural Tube Defects
In April 2015, the World Health Organization (WHO) released the Guideline on Optimal Serum and Red Blood Cell Folate Concentrations in Women of Reproductive Age for Prevention of Neural Tube Defects. The purpose of the guideline is to define the level of red blood cell folate concentrations in a population that is sufficient for the prevention of neural tube defects.
Birth Defects COUNT Partner Newsletter
Sign up to receive semi-annual newsletters from Birth Defects COUNT, CDC’s global initiative to prevent neural tube defects, including highlights from global birth defects prevention projects, partner activities, and the latest science.

Center for Spina Bifida Prevention

PACT packet to promote healthy pregnancy

Food Fortification Initiative

Video: The Story of Folic Acid Fortification
Video: Folic Acid: The Best Thing Since Sliced Bread
Why Fortify? Prevent Neural Tube Defects
Economic impact of fortifying flour
How fortifying flour could be used in Europe to prevent NTDs:
Fortify Grains to Prevent NTDs in Africa
To know if a country fortifies wheat flour, maize flour, and/or rice with folic acid, see the country profile on the FFI website.
For data on multiple countries, send a request

Hydrocephalus Association

Detailed information on hydrocephalus
Free downloads of our booklets, fact sheets, questions to ask your doctor, webinar recordings, and educational videos. English and Spanish
The Hydrocephalus Resource Library is a collection of articles, resources, research studies, etc.
List of physicians across the US that treat children and/or adults with hydrocephalus.
List of Community Networks across the US and one in Nigeria.
Hydrocephalus Association WALK Schedule 2016 across the US.

International Federation for Spina Bifida and Hydrocephalus

Fortify Grains to Prevent NTDs in Africa

IF Policy Statement on Prevention of Neural Tube Defects and Mandatory Food Fortification

FORTIMAS: An Approach for Tracking the Population Coverage and Impact of a Flour Fortification Program

Act against Europe's most common birth defects: The right advice at the right time can reduce Neural Tube Defects now

Act against Europe's most common birth defects: One year on - Defining Neural Tube Defect prevention strategies in Europe

March of Dimes

March of Dimes global report on birth defects
World Birth defects day
Birth defects research
Birth defects & other health conditions
What's spina bifida?
International Clearinghouse for Birth Defects
National Birth Defects Prevention Network (NBDPN)
News Moms Need blog
Nacersano blog

Spina Bifida Association

Fact sheets in Spanish about Spina Bifida (SB)
Health information sheets
Resources for educators and parents of school-age children with SB
List of clinics that treat adults and/or children with SB
List of affiliated chapters and some support groups around the U.S

SBA online newsletter: SB Insights

Our Leadership