The KCNQ2 Cure Contact Registry is used to inform individuals/guardians with KCNQ2 developmental and epileptic encephalopathy about:
- opportunities to participate in research
- opportunities to contribute data
- discoveries about KCNQ2 that may impact care decisions
- allow you to choose what information other types of information you would like to receive (i.e. newsletters/blogs, fundraising opportunities, events, connect with other families in your area, updates on the family and professional Summit and family meet-ups, etc.)
Registrants' contact information will not be shared with anyone outside of the KCNQ2 Cure Network. Registrants will be provided with contact information about relevant research and survey efforts. These initiatives will include our own internal projects as well as the projects of outside researchers.
We will not use this list for KCNQ2 Cure marketing or fundraising unless you choose to be updated on such topics. If our policy about acceptable use of our contact registry ever changes, you will be notified. You may opt-out of the contact registry at any time by contacting us.
All Information is strictly confidential. It will not be sold or provided to any other sources and will only be used for the purposes stated above. Contact us with any questions by email at firstname.lastname@example.org.