You have a story to tell. Your experiences finding care, information, and support can be used to improve care for yourself and other families.
A group of nonprofits and the federal government (Genetic Alliance, the American College of Medical Genetics (ACMG) and the Health Resources and Services Administration) are conducting a survey on access to and the quality of genetic services. Your answers to the survey below will help create a meaningful message about what is needed to improve genetic services and the overall health care experience for individuals with genetic conditions and their families.
You can complete the survey at the following link: https://www.surveymonkey.com/r/ImprovingGeneticServices
To be eligible, respondents must live in the United States and have been told by a doctor or other health care provider that they (or their child) have a genetic condition. The deadline to submit survey answers is Wednesday, October 28.
If you have any questions about the survey or use of the data, please contact Sharon Alexander, Program Manager at firstname.lastname@example.org. This project has been approved by Genetic Alliance’s Institutional Review Board (IRB) to protect all survey respondents and ensure that all responses will be kept confidential.