With the help of the HD community, we already have over 700 responses. Our goal is to get to 1000 by the end of August. If you are a person with HD or JHD, or care for a person with HD or JHD, or have cared for one in the past, please take a few minutes to take action.
The FDA is convening a number of meetings on the topic of risk-benefit to learn about specific disease areas, including HD. They want to hear directly from patients and caregivers to better understand how patients evaluate a potential product’s benefits and risks. Although the HD meeting has not yet been scheduled, we know it will take place between October of 2014 and October of 2015.
It is important that the FDA hear from as many people as possible to better understand HD, the current treatment options and what benefits and risks in drug development are meaningful for HD families. If you’ve already completed the survey, you can help by sharing the survey with other HD family members via email, as well as via social media.
A second survey will be released in early fall and will cover the treatment options that are currently available for the symptoms of HD. If you have any questions about the surveys of HDSA’s work with the FDA, please don't hesitate to contact me. Thank you in advance for taking action, and for everything you do to participate, educate and advocate.
Jane Kogan, LMSW
p: (212) 242-1968 extension 226
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