Support & Research

 How Often does Cockayne Syndrome Occur...

  • Cockayne syndrome’s occurrence is unknown but estimated at about less than 1 in 100,000.
  • Cockayne syndrome doesn't occur under any special circumstances.
  • Cockayne syndrome also does not occur more frequently in any one group of people.
  • At the time, no prevention of this disorder is known other than genetic study to determine whether or not you are a carrier of this disorder and whether or not your children could inherit this disorder.

 Support & Research Efforts...

  • Family’s and caregivers of Cockayne syndrome patients once again differs with the extent of the individuals symptoms. The demands could be anywhere from 24 hour a day care to just needing help with certain things like eating or bathing. The stress is also related to how severe symptoms are and the more severe a patient is the more stressful the situation will become.
  • Organizations helping with CS:
    • CLIMB children living with inherited metaboic diseases;
    • Human Growth Foundation;
    • Let Them Hear Foundation;
    • MAGIC Foundation for Children’s Growth;
    • National Consortium of Deaf-Blindness;
    • Perkins School for Blind; Progeria Research Foundation, Inc.;
    • Share and Care Cockayne Syndrome Network, Inc.
  • Each of these organizations concentrates on helping the families and patients with disorders. They offer meetings and support for anyone who needs help with the disorder whether its your child or yourself.
  • Websites, meetings, telephone lines, and spokespeople interact with the public for these organizations.
  • These organizations do have conferences with doctors as well as parents who previously and currently deal with the disorder in their families to provide information about Cockayne syndrome to others who need help in caring for their children or themselves.
  •  The previous organizations along with Berkely’s Pricsilla Cooper, and Swedens  Information Centre for Rare Diseases are studying Cockayne syndrome looking for answers. Others credited for Cockayne syndrome research are  University of Sussex, and NorthShore University.
  • All these organizations, hospitals, and Universties conduct their research in their respective labs.
  • There is no evidence of research on studying a potential cure, only research on causes of the gene mutations and causes of symptoms in the different types of Cockayne syndrome.
  •  Cockayne syndrome research is about as rare as the disorder itself, much of the above studies is on exactly why the DNA can’t repair itself in a person with Cockayne syndrome. Other topics are studing the progeria that accompanies Cockayn syndrome, and how these two symptoms could be connected to the same  gene abnormalities.
  •  The extent of Government involvement in Cockayne syndrome is Work Papers about research on the disorder. Non-profit organizations and foundations are who earn the money and perform the research for advancements in Cockayne syndrome because the governnent doesn’t see enough need to finance the research since is such a rare disorder.
  • Most of the funding for Cockayne syndrome is from the public, unless a private foundation uses their own funding.