Shivani B. Nazareth, RARE Blog contributor and a board-certified genetic counselor with Counsyl, Inc, is conducting an anonymous survey to better understand the financial cost of caring for a child with a rare genetic disease.

By participating in this survey, you will contribute to a research paper that will quantify the financial burdens endured by parents of children affected by genetic disease. The aggregate, anonymized opinion of the community will be shared with everyone from politicians to health insurance companies and will assist in bringing about change and reforms.

Click here to participate. Please allow about 30 minutes to complete.

X