We now have a new online communication tool for you all called Families Connect! This is a great place for parents, caregivers and patients of the IRPS to communicate with other parents, caregivers and patients about experiences, challenges, treatments and craniofacial conditions. Families Connect is a forum on the NFFR website that you can register for.

Once you have registered there 5 are condition specific groups for craniofacial conditions. Each condition group has two categories PARENT/CAREGIVER or PATIENT. The great part about this is you are communicating only with your peers and those who have the same condition! Once you choose which group you are a part of you can post your own comments/questions or reply to other peoples questions, it is that easy. Make sure if you write a question or you want to follow a topic, subscribe to the post and you will get an email anytime something new is written on that topic.

This is the perfect place to ask advice about preparing for surgery, school, siblings, bullying or anything else that you would like support with. There are so many of you in the IRPS family it is important to know you are not alone and that you can help each other. Make sure to visit nffr.org/resources/families-connect to register and start sharing!