SETBP1 Family Registration

Completion of this form will add you to SETBP1 Society’s family contact database for our newsletters, conference announcements, studies, and other updates. In order to gain access to our online support resources, such as our SETBP1 Facebook Parent Support page, you must first register. This database is not shared with external organizations.

Additional SETBP1-related disorders Registries you should consider joining:
Simons Searchlight’s SETBP1 registry

Fields marked with an * are required.

I Agree*

I agree to allow SETBP1 Society to store information about myself and/or my dependent with a SETBP1 difference so that I may be contacted with information about research opportunities and updates about medical discoveries impacting care decisions about SETBP1-related disorders. I understand that my data may be used in aggregate to compile and publish statistics about the incidence of SETBP1-related disorders. By using this form I agree with the storage and handling of my data by this website as outlined in our Privacy Policy.

First Name of Contact Person*

Last Name of Contact Person*

Street Address

City*

State/Province

Non-US State or Province

Postal/Zip Code*

Country*

Email*

Telephone

Your primary contact number

Language

If English is not your native language and you would require translation services to answer medical questions in English, please provide your preferred langauge.

Individuals First Name*

Individuals Last Name

Birth Date*

MM/DD/YYYY

Genetic Diagnosis*

Please include the portion of the gene that has a change causing SETBP1-related disorder. It may look something like p.xxxxx and c.xxxxx on the genetic report. Please also list if the report states pathogenic, likely pathogenic, unlikely pathogenic, or uncertain significance. Please consult your genetic report to give the exact location of the change. (If you need help reading the report, enter I don't know and we will contact you).

Newsletter List

Yes I would like to be added to the newsletter list to receive updates on SETBP1 Society news and events.

Add My Child to Community Map

Yes I would like my child to be added to the SETBP1 Community Map.

Please answer this question to verify you are a real person.*

5 − 3 = ?