Publication date: 18 Jul 2024
Calling all rare disease parents!
Historically, genetic disorders were often named after the clinician(s) who were involved in the first few diagnoses. Now, the field of medical genetics has moved towards naming genetic conditions after the gene involved-- it usually looks something like “ABC123-related disorder.” Are you a parent navigating life with a child under 18 years of age diagnosed with a genetic disorder named after the gene involved, like SCN1A-related disorders or another gene-related disorder?
Two genetic counseling students from Augustana University are conducting a research survey to understand the unique experiences of families like yours. Your participation will help them shape the future of healthcare practices and support services for families with genetic disorders.
Your responses will remain completely confidential and will contribute to their valuable research in the field. Plus, you’ll have the option to participate in a follow-up phone interview to share more of your family’s story and receive a $15.00 Amazon gift card if you are one of the first 20 interviewees! The hope is to better understand how the names of genetic disorders impact families' ability to access medical care, educational support, and social support groups. If you have any questions, please reach out to the study team at augiecapstone@gmail.com. Let’s work together to make a meaningful impact in the lives of families with genetic disorders. Your voice matters!
To participate, visit https://augie.qualtrics.com/jfe/form/SV_bQoo7dWynyrgAOa.