You are NOT alone.

We are glad you that have made it to this page and we want you to know, that you are NOT alone. This page was created to serve as a guide through this site and to help you find the resources that we have collected here. Please feel free to use the links within this site in any order that you would like, however, as parents ourselves, we know what it is like trying to learn all that you can while trying to advocate for the very best treatment for your child. We hope the suggestions below make the journey a little easier.

1. Start with the CYFIP2 Questionnaire. This questionnaire, while entirely voluntary, helps us to gather data for families and researchers to better understand CYFIP2-related symptoms and presentations in various cases. Some of these symptoms may present in time and you may edit your answers at any time. You may also elect to leave your contact information for updates or remain completely anonymous.

2. Explore the Research page. These links are a collection of publications that we and other families have found helpful in learning about CYFIP2-related EIEE, treatment options and research studies. We hope that this collection makes your search a little easier. We know that new articles and research are published all the time and we try to include these as quickly as possible for families. The research page is continuously being updated. If you find anything that you feel should be included, please don't hesitate to reach out to us! There is a lot of information out there that could be helpful to someone.

3. Highly Recommended! --> At the top and bottom of this page are links to Facebook Parent Communities. The parent support groups provide not only a huge amount of information but are a caring community of others who know exactly what you are going through. *If you manage a related online support group, we would love to link your group here to help others find resources that exist! Please contact us if you would like your group to be linked on this page.*

4. Lastly, if you would like to become more involved by spreading awareness, helping other families or volunteering, please check out the Events and Volunteers pages. Please feel free to reach out to us!