STUDY 1Quality of Life Survey for Individuals with Marfan Syndrome

Ileana Ratiu, Ph.D., CCC-SLP, and her research team members are conducting a research study on the quality of life in individuals with Marfan syndrome. This research study has been reviewed and approved by the Midwestern University Internal Review Board.

You can participate by completing this survey, which should take no longer than 20 minutes. This survey asks you about various aspects of your daily life and will help us determine what challenges individuals with Marfan syndrome might experience in their daily lives. Read more

STUDY 2: Enhanced CARE for RARE Genetic Diseases in Canada

Thank you for your interest. This survey is now closed. If you’d like more information about our study, please contact Karen MacDonald (; 403-210-6706).’