AN INTRODUCTORY GUIDE TO GENE THERAPY

AN INTRODUCTION TO GENETIC HEARING LOSS, GENETIC TESTING AND GENE THERAPY

The group decided the new leaflet should be for parents of deaf and hard of hearing children, those with CI and for professionals who work with them, including audiologists, speech and language therapists, psychologists and educators.  With the media interest in gene therapy it was felt vital that this leaflet should be fully accessible to such groups, and not just handed out in a clinic by professionals. Parents in particular  and those with CI felt entitled to be up to date in such information and are already very interested in this area.

The group was aware that for some countries, genetic testing is not yet an option, but even in these countries, parents are asking for information about gene therapy and need to be included in information dissemination. 

Focus groups with parents, CI and HA users and professionals from across the globe met to discuss the development of an information leaflet on this topic.  It was felt that this accessible information on this complex topic was much needed, and the leaflet went through many iterations and discussions.  The group was aware that for some countries, genetic testing is not yet an option, but even in these countries, parents are asking for information about gene therapy and need to be included in information dissemination

DOWNLOAD THE INFORMATION LEAFLET HERE. 

We are grateful to Sensorion for their support for this project.