Rare Disease Type B Registry – Activation Form

We invite you to be part of our community of patients, families, and researchers who are working together to improve the knowledge and treatment of Cockayne Syndrome type B.

Cockayne Syndrome is a rare genetic disorder that affects many parts of the body. By filling out the patient registry, you can help us gather valuable data and make a difference in Cockayne Syndrome research.

Parents

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) *

Children with rare disease

Name and surname of the child: *

Date of birth *

Diagnosis *

Type of disease *

Is there a cure or treatment for the disease

Yes

I dont know

TREATMENT IS SYMPTOMATIC (alleviation of symptoms)

Brief description of the child's illness and condition: *

Other notes / special features:

Other

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

Yes

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

Yes

By filling out this form and confirming that I AGREE, I join the and agree that personal data 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 reuniting families, if you have agreed to this above): *

I agree

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You can revoke your consent at any time in writing (to e-mail drustvo@viljem-julijan.si). At any time, you can also request access to your personal data, its correction, deletion or limitation of processing, by sending a written request to drustvo@viljem-julijan.si

Rare Disease Type B Registry – Activation Form

Parents

Children with rare disease

Other

Thank you for your donation ❤