Cockayne Syndrome Patient Registry – Register as a Patient

Name and surname of parent 1 (father/mother) *

E-mail *

Telephone *

Name and surname of parent 2 (father/mother)

E-mail

Telephone

Address (street, town, postal code, country) *

Name and surname of the child *

Date of birth *

Diagnosis *

Type of disease *

Genetic Cancer Infectious Unknown Other

Is there a cure or treatment for the disease?

Yes No I don't know Treatment is symptomatic (alleviation of symptoms)

Brief description of the child's illness and condition *

Other notes / special features

Do you want to connect with families of children who have the same disease? *

Yes No

I agree to forward my contact to the parents of a child with the same or very similar disease *

Yes No

By filling out this form and confirming that I AGREE, I join the registry and agree that personal data — including data about my child’s health — is processed in accordance with the Personal Data Protection Act and the GDPR. We will not pass on personal data to third parties (except for the purpose of connecting families, if you have agreed to this above). See our privacy policy. *

Cockayne syndrome registry – activation form

Parents

Child with a rare disease

Other