Before You Look for Information on Spina Bifida
Sorting through the wealth of online information on spina bifida can be a daunting task. What's worth reading, and what's a waste of time? Start with this recommended list of resources to find the information you need to understand and help your child.
On this Parenting Special Needs Site
There are lots of articles on this site of interest to parents of children with spina bifida, but these three will give you a good place to begin.
From the About.com guide to Rare Diseases
Mary Kugler, R.N., the About.com guide to Rare Diseases, has many articles of interest to parents of children with spina bifida. Start with these three.
Just the facts
These reference sites give good overviews of spina bifida diagnosis and treatment.
U.S. organizations
These U.S.-based organizations offer information, services and support to individuals with spina bifida and their families.
International organizations
Organizations around the world provide support and information for families of children with spina bifida. Start with these three sites to connect with resources and individuals.
Family sites
These sites offer information, understanding, and support to families of children with spina bifida.
Research
Find out how your child can participate in research studies on spina bifida through these sites.
Support
An e-mail support group can be an important source of guidance and fellowship in parenting your child with spina bifida. Start with these three lists.
On this Parenting Special Needs Site
There are lots of articles on this site of interest to parents of children with spina bifida, but these three will give you a good place to begin.
- What Is Spina Bifida?
- First Five Things to Do After Your Child Is Diagnosed With Spina Bifida
- Preparing the School for Your Child With Spina Bifida
From the About.com guide to Rare Diseases
Mary Kugler, R.N., the About.com guide to Rare Diseases, has many articles of interest to parents of children with spina bifida. Start with these three.
Just the facts
These reference sites give good overviews of spina bifida diagnosis and treatment.
U.S. organizations
These U.S.-based organizations offer information, services and support to individuals with spina bifida and their families.
International organizations
Organizations around the world provide support and information for families of children with spina bifida. Start with these three sites to connect with resources and individuals.
- Spina Bifida and Hydrocephalus Association of Canada
- International Federation for Spina Bifida and Hydrocephalus
Family sites
These sites offer information, understanding, and support to families of children with spina bifida.
Research
Find out how your child can participate in research studies on spina bifida through these sites.
Support
An e-mail support group can be an important source of guidance and fellowship in parenting your child with spina bifida. Start with these three lists.