Skip Navigation

ACC - Other links

The following list is presented as a service to families and others interested in callosal conditions and other disability-related issues. Content reflects the varied views, broad experiences, and specific work of individual website hosts, not necessarily those of the ACC Network or the University of Maine.

Organizations Dedicated to Callosal Conditions

  • Corpal – www.corpal.org.uk
    A support group for families and caregivers in the United Kingdom caring for those with callosal conditions and/or Aicardi Syndrome.
  • NODCC (National Organization for Disorders of the Corpus Callosum) -  www.nodcc.org
    Non-profit organization dedicated to gathering and disseminating information regarding agenesis of the corpus callosum and other callosal disorders.

University-affiliated

  • California Institute of Technology, Pasadena, CA
    Corpus Callosum Research Program – www.emotion.caltech.edu/agcc/index.html
    Information regarding ongoing ACC research program at Caltech. Includes information about ACC and answers to FAQs.
  • Shufflebrain: Agenesis of the corpus callosum -  www.indiana.edu/~pietsch/agenesis00.html
    Website of Dr. Paul Pietsch, PhD, Professor Emeritus, Indiana University; includes photos and MRI views of the corpus callosum and abstracts of medical literature related to ACC.
  • University of California, San Francisco
    Brain Development Research Program- http://neurology.ucsf.edu/brain/callosum/callosum.htm
    Describes the ACC research project currently being conducted by Dr. Elliot Sherr and his colleagues at UCSF into the genetic causes and clinical features associated with callosal conditions.
  • University of California, San Francisco
    Fetal Treatment Center – fetus.ucsfmedicalcenter.org/corpus_callosum/
    Information intended for families facing a prenatal diagnosis of ACC in their unborn child.

Related Conditions

  • Aicardi Syndrome Foundation – www.aicardisyndrome.org
    Family-friendly website providing information, resources, research information, and networking opportunities for families affected by Aicardi Syndrome.
  • The Hydrocephalus Association – www.hydroassoc.org
    Organization dedicated to providing support, education and advocacy for individuals, families, and professionals regarding issues related to living with hydrocephaly.

Disability Issues

  • The Arc – www.thearc.org
    National organization dedicated to promoting and improving supports and services for persons with developmental disabilities and mental retardation and their families. Includes information on public policy issues related to disability.
  • Beach Center on Disability – www.beachcenter.org
    Dedicated to research, teaching and technical assistance to improve the quality of life for families and persons with disabilities; includes parent-focused information and resources.
  • Maine Trust for People with Disabilities – www.themainetrust.com
    Information related to setting up a special needs trust for family members with a disability in the state of Maine. Includes links for resources applicable to other states.
  • MUMS (National Parent to Parent Network) -www.netnet.net/mums/
    Organization dedicated to helping families network with one another by matching families with children living with similar conditions or disabilities.
  • NICHCY (National Information Center for Children and Youth with Disabilities) – www.nichcy.org
    A wealth of information, downloadable fact sheets, and resources on disability-related issues, including educational law and research-based effective educational practices.
  • Special Needs Answers Sponsored by the Academy of Special Needs Planners – www.specialneedsanswers.com
    Information related to long-term planning (financial and legal) for families with a member with special needs.

Government Resources

  • NINDS (National Institute of Neurological Disorders and Stroke) – www.ninds.nih.gov/disorders/agenesis/agenesis.htm
    One page information sheet about ACC
  • Disability Information – www.disabilityinfo.gov
    Federal government website for information related to disability rights, education, housing, transportation, employment, technology, health and community living for persons with disabilities and their families.


Back to ACC