CHARGE Lab at Central Michigan University
The CHARGE Lab at Central Michigan University undertakes a variety of research projects relating to CHARGE and behavior.
Bulldog CHARGE Syndrome Research Lab
Research and Awareness Lab for CHARGE Syndrome at Mississippi State University. Mission to improve the lives of individuals with CHARGE.
Cincinnati Children’s CHARGE Center
The CHARGE Center at Cincinnati Children’s is a center designed to help families negotiate both the medical and developmental challenges associated with this condition. A nurse coordinator will work with you and a team of specialists will review your son or daughter’s records and work with your family on a plan of action.
Feeding Tube Awareness Foundation
Foundation providing support and information relating to tube-feeding.
http://www.feedingtubeawareness.com/
Low Vision Gateway
Resources for vision loss, vision-impairment, blindness, low vision aids and low vision rehabilitation services.
https://www.gatewaylowvision.com/
Lighthouse Guild
Non-profit organization dedicated to preserving vision and to providing critically needed vision and rehabilitation services to help people of all ages overcome the challenges of vision loss.
http://www.lighthouseguild.org/
National Joint Committee for the Communication Needs of Persons with Severe Disabilities
National Joint Committee for the Communication Needs of Persons with Severe Disabilities – The purpose of the NJC is to promote research, demonstration, and educational efforts, including both in-service and preservice, directed to helping persons with severe disabilities communicate effectively.
http://www.asha.org/njc/
National Library Service for the Blind and Print Disabled
National Library Service (NLS) is a free braille and talking book library service for people with temporary or permanent low vision, blindness, or a physical disability that prevents them from reading or holding the printed page.
https://www.loc.gov/nls/
Rady’s Children’s Center for CHARGE
At Rady Children’s Hospital, we take pride in providing the best pediatric care for CHARGE syndrome diagnosis and management. Our program for CHARGE patients is distinctive due to our expert multidisciplinary team approach, ensuring that each child receives comprehensive and coordinated care tailored to their unique needs. Medical professionals from our program services include Otolaryngology (Ear, Nose & Throat), Audiology, Plastic Surgery, Nephrology, Urology, Genetics, and our Heart Institute.
With the opening of a dedicated CHARGE center in San Diego, California, we recognize the critical importance of accessibility for families on the West Coast. Our goal is to bridge this gap by providing CHARGE families with the exceptional, synchronized care their child needs. A coordinated team evaluation is conducted to assess each child’s individual needs and produce an ongoing care plan to help CHARGE patients based on input from all disciplines.
https://www.rchsd.org/programs-services/charge-syndrome/
Wonderbaby.org
A project funded by Perkins that is dedicated to helping parents of young children with vision impairments as well as children with multiple disabilities.
http://www.wonderbaby.org/
May We Help
An organization based out of Cincinnati, Ohio that engineers and builds devices for people with disabilities to enhance their lives at no cost to them.
http://www.maywehelp.org/
Checkrare.com
CheckRare is a rare disease and advocacy website for health care professionals, patients, and caregivers. They focus on rare diseases, new and emerging therapies, clinical trials, diagnostics, and the companies behind them.
Checkrare.com
