More Information and Resources

When dealing with something as traumatic as anencephaly, you can’t have too many helpful resources. Here are some more great links covering different concerns you might have surrounding anencephaly.

Birth Defects Advocacy Groups

  • SL Start: Families in Washington and Idaho can find help through SL Start, a human services organization that provides support to those affected by disabilities.
  • National Organization for Rare Diseases: NORD funds research into many rare diseases, helps assist patients with rare diseases, and provides news and information about research findings and opportunities to participate in scientific studies. 

Support For Parents

  • MUMs National Parent-to-Parent Network: MUMs matches parents across the nation whose children are affected by a rare diagnosis, birth defect, retardation, or disability. These parents can support one another through the difficulties of caring for a child with a severe condition.           
  • Genome.gov: This U.S. government site compiles links to information about genetic counseling services, advocacy, and support.
  • Birth Defects Resources: The California government maintains this site that links to both nationwide and state-specific resources for families affected by birth defects.
  • Family Village: The University of Wisconsin Extension school runs this portal for parents and families dealing with disabilities.
  • The Father’s Network: Fathers may need special support and help when dealing with an anencephaly diagnosis. The Father’s Network was created to support dads with special needs children.

Facts About Anencephaly and Genetic Birth Defects

Ethical Issues

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