New diagnosis of cfc syndrome
Welcome
A message from Ashley Genelin, Program Manager
Welcome to CFC International!
Our son, Myles, was diagnosed with CFC syndrome at just 3 months old while he was still in the NICU. At that time, my husband and I had never heard of CFC syndrome and felt lost. Soon after Myles’s diagnosis, we discovered CFC International, where we were warmly welcomed and provided with numerous resources to help us understand our son’s condition.
The CFC International community is a truly supportive, engaged, and welcoming place. Here, you can connect with other families who share similar experiences, receive valuable education about CFC syndrome, attend CFC Family Medical Conferences, connect with RASopathy Clinics, and much more.
We encourage you to reach out at any time with questions or to share your family’s experience. You can contact the organization at info@cfcsyndrome.org, or reach out to me directly at agenelin@cfcsyndrome.org.
I am honored to be part of this organization and look forward to connecting with you soon!
What now?
You’ve found CFC International! We are so happy you are here. We have been supporting families for 25 years, and we are here to help.
Start with these steps.
-
Take the first step in receiving the support and resources needed to empower your family. We will add you to our email list and send you newsletters, updated information about CFC syndrome, and invitations to various events and conversations throughout your journey.
CLICK HERE FOR CONTACT REGISTRY -
Join other newly diagnosed parents and caregivers and learn about CFC syndrome, CFC International and how we can help you throughout this journey.
-
These documents provide you with helpful information for parents, caregivers and educators.
