the Center of Genomics and Policy (McGill University) is conducting a study on preferences and experiences of patients with rare diseases on new genetic technologies for diagnostics, as part of the CARE for RARE project, a pan-Canadian project exploring new technologies for diagnostic of rare diseases.
Whether you are an adult having received a diagnosis for a rare disease or being suspected of having one, or a parent of a child having received a diagnosis for a rare disease or being suspected of having one, we would like to invite you to participate in a group discussion on your experiences with the health care system as well as your preferences regarding genetic testing, within the horizon of a new genetic diagnostic tool (Whole Exome Sequencing) arriving at the clinical setting.
The meeting venue will be in Calgary and Edmonton, but should you live outside these areas, other possibilities may be arranged.
If you are interested in participating in the study or would like to have more information, please contact Kathleen Charlebois at :
Toll-free number: 1-855-398-6724
E-mail: kathleen.charlebois2 at mcgill.ca
Care for Rare research team at the Centre of Genomics and Policy