CDG CARE Family Support Network

Registration Form

The CDG CARE Family Support Network connects patients, families, and caregivers together and promotes the support of resources and inspiration to those living with CDG. Whether you or your child have been recently diagnosed with CDG, or have been living with a CDG diagnosis for some time, this Network is for you! Please fill out this short form so we may provide you with specialized resources and connections with other CDG families. Please only complete the form ONCE for each individual affected with CDG. Entries by multiple parents or caregivers is not necessary. If you have any questions, please email info@cdgcare.org.

Terms of Use*
I agree and acknowledge that I am authorized to provide the following information about myself, my family and the person(s) diagnosed with CDG listed hereafter.
Your Name*
First Last
Please select your Relationship to the individual diagnosed with CDG:*
Do you have more than one family member in your household diagnosed with CDG?*
Please complete and submit this form once for each family member that has been diagnosed with CDG.
Please provide the Name of the individual diagnosed with CDG:*
First Last
Please provide the Date of Birth of the individual diagnosed with CDG:*
Month
Day
Year
Please provide the Gender of the individual diagnosed with CDG:*
Please provide the Race of the individual diagnosed with CDG:*
Please enter the approximate year that the confirmed CDG diagnosis was made:
Is the individual with CDG living?*
Please select the individual’s confirmed CDG Type from the list provided:*
If additional testing has not been performed to confirm this, please select “Genetic type not provided”.
Please provide the Name of the Primary Medical Center where you seek treatment for CDG related issues:
This may or may not be geographically close to your home.
Please provide the Name of the CDG individual’s Primary Physician who provides CDG-related oversight and care:
Please select the Type of Specialty of the Primary Physician, listed in the question above if answered, who provides CDG-related oversight and care:
Other Physician Specialty Type:
Are you completing this form because your child or family member has recently received a confirmed diagnosis of CDG?*
Would you like to volunteer to become a Family Support Ambassador for CDG CARE?*
Family Support Ambassadors are experienced with CDG and are willing to reach out to newly diagnosed families, typically in his/her geographic region and/or his/her native language to provide support, and share experiences about resources and living with CDG
Email*
Phone
Address*
Street Address Address Line 2 City State / Province ZIP / Postal Code Country
Contact Policy*
I understand and agree that CDG CARE may contact me to inform me about CDG related events, education programs, resources and/or opportunities, advocacy efforts, research studies and clinical trials, offered by or in conjunction with CDG CARE.
Name
This field is for validation purposes and should be left unchanged.