AJE knows that many families find accessing genetic information, counseling and services to be difficult.  We have a playlist of video with families who have shared thier experiences navigating genetic services as parents that some families new to the process have found helping in understanding both what to expect and the emotional journey involved.   You can the playlist here – https://youtube.com/playlist?list=PLCDtx1mKJSfmmh9yFmGafpkS0ku4beiDD&si=6O5RFMXzV5A1oqwj and we enjoy to look at the collection of videos to see any are helpful to you.

AJE is glad that researchers are working to make Genetic Care more accessible and better for families, and want to share this opportunity to share your experieces with researchers who are hoping to improve the family experience.  Participation includes completing a 30-minute survey. At the end of the survey, families will be given the option to take part in a one-time, 1-hour interview to share their experiences in more detail. All information will be kept confidential. Participants who complete the survey will be entered into a raffle to win 1 of 6 $100 Amazon gift cards. Those who complete the optional interview will receive a $50 virtual Amazon gift card for their time.

PatientPerspectivesStudyFlyer