Do you, or someone you know, have lived experience with Corpus Callosum Dysgenesis? Many resources and support organizations exist.

Support Organizations

Multiple organizations around the world are committed to supporting those with lived Corpus Callosum Dysgenesis experience, their support network, and professionals.

Lived Experiences

A number of individuals who have lived experience with Corpus Callosum Dysgenesis have shared their experiences and perspectives. Click below to read about their experience.

Parents of children with Corpus Callosum Dysgenesis

  • The NODCC provides a collection of resources specifically for parents who wish to communicate the needs of their child effectively to their child’s educators and professionals who may not be familiar with Corpus Callosum Dysgenesis: Parent to Educator Communication Materials
  • AusDoCC have produced the Teacher guidelines which aim to help teachers who have a student with Corpus Callosum Dysgenesis in the classroom. Aside from containing general information, this resource has a space for writing specific information about the child.
  • Corpal has published a Carer information sheet with a brief overview of Corpus Callosum Dysgenesis.

Printable Resources

  • The DCC brochure, created by the NODCC, is a printable brochure that contains helpful information about the Corpus Callosum and associated disorders and challenges.
  • AusDoCC has created the ACC and other Disorders of the Corpus Callosum brochure, containing details and resources related to Corpus Callosum Dysgenesis.

Research Publications

The International Research Consortium for the Corpus Callosum and Cerebral Connectivity (IRC5) is a group of clinicians and scientists who collaborate and strive to make discoveries that benefit the lives of affected individuals. The IRC5 maintains a list of publications authored by members.

A Good Life Advisory Panel (AGLAP) is interested in the personal wellbeing of adults with a corpus callosum disorder. Their research is conducted by individuals with CCD experience. More information can be found here.

Further Reading

  • NODCC has a collection of helpful links.
  • Additional resources from AusDoCC can be found under their ‘Resources’ tab.
  • More information from Corpal can be found under their ‘Information’ tab.

Discussion Groups

  • The ACC-listserv is an online, email-based discussion group with over 500 adults with Corpus Callosum Dysgenesis, family members, and professionals participating.
  • Organizations such as NODCC, AusDoCC, and Corpal all have membership programs, providing access to community and and discussion groups. Often, these organizations will also have active Facebook groups.
AusDOCC Riverboat Cruise with Dr. Richards in the middle of the back row.