Family Resources

Learn more about CAMK2

 

PARENTS’ PRIMER

RESOURCES FOR PARENTS AND FAMILIES

Our parent and scientific board collaborate and source the latest information and announcements to share with our community. Check back regularly for news and information about events and developments in the field.

FACEBOOK PAGE
Two members of our Parent Board launched this Facebook group in 2016, our earliest effort to create community among families affected by CAMK2.

CAMK2 COMMUNITY NEWSLETTER
Parent Board member Inês Bastos’ newsletter, Community Stories form CAMK2 Families, is a work in progress to give support and hope to families.  Send an email to be included on the mailing list.

ENCORE
Founded in 2010, ENCORE is a patient and clinical research resource for rare congenital disorders, including CAMK2.

CAMK2 CARE PATHWAY
The Pathway was developed by a team of physicians specializing in this disorder, and is based on the most recent available scientific research by the CAMK2 Expertise Centre, part of ENCORE. It was designed to support parents and practitioners in delivering the highest-quality medical treatment. Download the Care Pathway here.

 

Plans are under way for our next in-person conference. News will be shared on this page in the coming months.