Dr. Blake's presentation brief from the National CHARGE syndrome workshop

Research studies need participation

Developing an auditory training program

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ATTENTION:  Young Adults with CHARGE syndrome

Laurie S. Denno, M.A., BCBA who is the Behaviour Specialist at Perkins School for the Blind, in the US and Pamela Ryan, M.A., C.A.G.S., School Psychologist at Perkins need information from the CHARGE syndrome young adults, who have finished school and are 18 years and older.  The topics covered on the survey will be: continuing education, vocational/day program services, recreation/leisure activities, housing, work, kinds of support needed.  The results will be reviewed to see where individuals with CHARGE live and work after they complete their education. 

Please contact Laurie.Denno@Perkins.org or Pamela.Ryan@Perkins.org for more information. CHARGE Syndrome Canada also has copies of the survey to send you at your request.

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HSCNews International is conducting a patient/disability survey on "Quality of Life" as viewed from the pateint or person with disabilities perspective. They ask, "Do you believe that doctors and the healthcare system should do more to improve the quality of life for individuals who have CHARGE syndrome?"  If you do then they state the problem is the medical profession, managers, administrators and politicians have little idea what the phrase "quality of life" means.   The survey is intended to help patients around the world determine key characteristics behind an improved quality of life.  

The results of the study will be made publically available. The study is funded by an educational grant from NovaNordisk, a Danish company that manufactures medicines for people with diabetes. 

Hard copies of the survey are available from CHARGE Syndrome Canada 

newsletter submissions welcome - please send to info@chargesyndrome.ca