Supports & Resources
KCNQ2 Family Supports and Resources
KCNQ2 Parent Support Group
KCNQ2 Cure hosts a family support group. The families in the support groups recognize the immeasurable value of communicating and sharing experiences in a closed/confidential setting. By sharing our stories, we pass on information relating to the diagnosis, treatments, medications, and research. The families in the group provide comfort, support, strength, and love when you need them most.
If you are the parent of someone affected by KCNQ2 developmental and epileptic encephalopathy, you may request to join by following the steps below:
- Request to join our Support Group on Facebook (you must have a Facebook account to proceed).
- If you do not receive an approval notice on Facebook within 5 business days check your email spam folder and then send us a message.
- We may require additional information to process your request.
The KCNQ2 awareness card was created especially for use in situations where there is an opportunity to educate members of the public about KCNQ2.
We’ve all had uncomfortable and frustrating moments when people stare or pass judgment on someone we care for who has KCNQ2. A little bit of knowledge and understanding can go a long way.
If you are interested in having personalized awareness cards please complete the following form. In return, you will receive an email with a high-resolution template for the cards which you can then choose how you would like to have them printed.