Tell Us About Your Health Insurance Experience

2018 Dystonia Insurance Survey


Individuals with all types of dystonia are invited to complete this anonymous survey to help us understand your experience with health insurance coverage relevant to dystonia.

The Dystonia Advocacy Network (DAN) is a collaborative effort of the Benign Essential Blepharospasm Research Foundation, the Dystonia Medical Research Foundation, the National Spasmodic Dysphonia Association and the National Spasmodic Torticollis Association to address the policy needs of the dystonia community including policies that affect access to treatment.  We are asking for your help to better understanding the current climate regarding insurance coverage of treatments for dystonia. All survey responses will be compiled and a report will be written and utilized by the DAN to develop an action plan to address the insurance needs of the community.  The survey is estimated to take 15 to 20 minutes and will provide information on your experience with getting your treatments reimbursed/covered by insurance. The survey is open now and will remain open until June 8, 2018.

To complete the survey, click here or visit:

Questions? Contact us.

Accelerating Research & Inspiring Hope

The Dystonia Medical Research Foundation (DMRF) has served the dystonia community since 1976. Join us in our global effort to find a cure.