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You Taught Me

This collection of stories provides a unique insight into how people with CHARGE Syndrome from around the world have lived their lives and touched the professionals they have gotten to know.  The booklet was initiated by members of the Deafblind International (DbI) CHARGE Network; one of several specialist networks that support the core activities of Deafblind International. The DbI CHARGE Network is an interdisciplinary network composed of teachers, intervenors, educators, therapists and doctors, among others. Whether you work with children or adults, you are welcome to join. We are also open to interested parents, grandparents, other relatives or friends, and to people with CHARGE syndrome themselves. We believe that sharing knowledge and experiences in this field is critical to our success. For more information on the Deafblind International CHARGE Network, please contact the chair of our network, Andrea Wanka (wanka@ph-heidelberg.de).  You can find the booklet HERE.

CHARTING the LifeCourse

The Charting the LifeCourse Framework was created BY FAMILIES to help individuals and families of all abilities and all ages develop a vision for a good life, think about what they need to know and do, identify how to find or develop supports, and discover what it takes to live the lives they want to live. Individuals and families may focus on their current situation and stage of life but may also find it helpful to look ahead to think about life experiences that will help move them toward an inclusive, productive life in the future.

Even though it was originally created for people with disabilities, this universally-designed framework may be used by any person or family making a life plan, regardless of life circumstances.

READY Tool: Readiness Evaluation of Transition to Adulthood for Deaf-Blind Youth (available in both English and En Español) – A tool to help a transition team, which includes an individual who is deaf-blind, parents and professionals, to determine essential activities during the transition process.

CHARGE Syndrome Checklist: Health Supervision Across the Lifespan

A comprehensive approach to health screening and management for individuals with CHARGE syndrome is
essential. This checklist was developed by Carrie Lee Trider, Angela Arra-Robar, Kim Blake, and Conny van Ravenswaiij. It is organized by body system and age to guide the healthcare provider in their approach to care. The checklist was evaluated using a modified Delphi method to develop a final consensus. The goal of the checklist is that the recommendations will promote improvements in care by preventing missed diagnoses, allowing for anticipatory counseling, and facilitating early referral for interventions and treatments.

Download the CHARGE Syndrome Checklist

What Exactly is a Support Service Provider (SSP) and How Do They Help People Who are Deaf-Blind?

See Deafblind People and Support Service Providers in the 21st Century, the most comprehensive publication to date on SSPs, now posted on NCDB’s website!
Support Service Provider White Paper

Checklist of Educational Needs for Individuals with CHARGE syndrome

The following checklist is a tool that can be used by school teams and early intervention specialists to help guide educational services for individuals with CHARGE syndrome.
Checklist of Educational Needs for Individuals with CHARGE syndrome