RESOURCES FOR PARENTS AND CAREGIVERS
CAMK2 Therapeutics Network sources 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 COMMUNITY
We support two Facebook pages for the CAMK2 community:
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CAMK2 Therapeutics Network Page: This page shares updates on the Network’s work, including progress on developing treatments, upcoming events, and news about research.
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CAMK2 Community Facebook Page: Run by our community, this page is a place to share experiences, discuss symptoms, ask questions, and connect with other families.
We encourage you to join and follow both pages to stay informed, share your experiences, and connect with the CAMK2 community.
VIRTUAL CAMK2 COMMUNITY MEETINGS
The CAMK2 Therapeutics Network hosts virtual community meetings that bring together the Foundation and families from around the world. These sessions feature presentations, open discussions, and opportunities to hear directly from physicians, scientists, and pharmaceutical leaders working on CAMK2 research and therapeutic development.
Summer 2025 Community Meeting
The CAMK2 Therapeutics Network provides financial support for families traveling to the Netherlands for a clinical assessment through the Encore Program at Erasmus Medical Center. This funding helps ensure that more children can access expert evaluation and care. If you are interested in applying for this funding mechanism, please email info@camk2.org.
THE ENCORE PROGRAM FOR NEURODEVELOPMENTAL DISORDERS
Erasmus Medical College has emerged as a Center of Excellence for CAMK2, supported by the international CAMK2 Therapeutics Network, ensuring that families have access to the most current knowledge, specialized evaluations, and research efforts aimed at understanding and treating this condition.
At the ENCORE Expertise Center within Erasmus Medical College, children with confirmed or suspected CAMK2 variants are evaluated by a multidisciplinary team with deep experience in rare genetic neurodevelopmental disorders. Through the CAMK2 consultation hour, specialists in neurology, genetics, psychiatry, physiotherapy, speech therapy, and behavior collaborate to develop a comprehensive picture of each child’s needs. When a Variant of Unknown Significance is identified, Erasmus Medical College performs targeted laboratory testing to better understand its potential impact. This centralized expertise supports—rather than replaces—the care provided by local pediatricians and neurologists, ensuring families receive informed guidance for epilepsy management, mobility and communication challenges, gastrointestinal issues, behavioral support, and educational planning.
As a Center of Excellence partnered with the CAMK2 Therapeutics Network, Erasmus Medical College plays a key global role in advancing knowledge of CAMK2 disorders. The center contributes to international research by collecting standardized clinical data, developing best-practice guidelines, and publishing findings that support future treatment development. Families may be invited to participate in research—always voluntarily and with strict privacy safeguards—helping accelerate progress toward better care and new therapies for CAMK2-related conditions.
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.