Access to Care for Individuals with Genetic Conditions

May 20 2013
Jun 6 2013
America/New York
Online Survey

Brief Description:

Genetic Alliance, in collaboration with the American College of Medical Genetics (ACMG) and the Health Resources Services Administration (HRSA), is conducting this survey to assess how individuals with genetic conditions access health care and support. The data will be very helpful in painting a picture of health care experiences of individuals with genetic conditions and their families, and will provide direction for future programmatic efforts with the goal of improving access and health.


Eligibility for Study Participation:

To be eligible, respondents must have been told by a doctor or other health care provider that they (or their child) have a genetic condition. 


Contact Information:

If you have any questions about the survey or use of the data, please contact Sharon Romelczyk, Program Manager at 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. 


Study Link: