New Parent Registry

Why Register?

  • Family matching services with hundreds of families world-wide
  • CLSF News delivery, ~4 times a year
  • Volunteer opportunities for research studies
  • Be informed of new developments in treatment options and therapies
  • Emotional and social support by people who know just what you are going through.

The user’s personal information is not shared with anyone without their express permission. Please review our Privacy Policy.

There is no membership fee for caregivers and immediate family members. For others, a $20/yr donation is suggested but not required.

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Name
Name of individual with CLS
This is for keeping track of the age of your family member. Nothing is shared.
Enter a numeric value
Has genetic testing confirmed the diagnosis?
Do you have any other family members with CLS?
Do you give permission for your contact information to be shared with other families in your area affected by CLS?