Charles Bonnet Syndrome Foundation (CBSF)

Mission statement

The Charles Bonnet Syndrome Foundation is dedicated to:

•  Assist people affected by Charles Bonnet Syndrome (including significant others)
•  Educate the general public about this condition
•  Educate health care practitioners of its clinical profile
•  Research the cause/s, prevention and treatment of Charles Bonnet Syndrome.

Aims

• To serve a significant (but largely neglected) sub-group within the vision-impaired community.
• To assist those living with CBS to manage their symptoms more effectively (so it does not overly impact upon the quality of their life).
• To remove the veil of secrecy, misunderstanding and stigma that is associated with the condition.
• To offer emotional support, reassurance, information provision, case management and practical assistance to those living with CBS (and their significant others).
• To raise public awareness about CBS within the general community.
• That CBS will become more familiar in everyday common language like Macular Degeneration and Sudden Infant Death Syndrome (SIDS).
• To raise the clinical profile of the condition within the health and welfare sectors in order to improve service provision (eg. enhanced diagnostic awareness and linkage to appropriate supports).
• To avoid misdiagnoses and inappropriate pharmacological treatments by the medical and allied health communities.
• To advocate for greater recognition of this condition in the health domain and for resources to be allocated accordingly.
• To channel a proportion of donated or raised monies into scientific/empirical research to further an understanding of the cause/s, clinical profile, prevention and possible treatment/s of CBS.

Services offered

The Charles Bonnet Syndrome Foundation offers the following services:

• Telephone support help line          (Monday to Friday, 12 noon - 5pm)
• Face to face support group in Melbourne             (others may follow in regional parts)
• Tele-conference support group   (Australia wide for people who are isolated or house bound)
• Tele-web services                     (eg. forum, Skype support service).
• Case management                    (metropolitan Melbourne)
• Presentations to academic, clinical and community groups.  
• Information brochures              (English, Large Print, Audio description, Braille, NESB).
• To allocate a proportion of donations and funds to further CBS research.