Calling all HD families: Our time to be heard is now!

Register today to help the FDA understand what symptoms and therapies matter most to HD patients and families

In 2013, Huntington’s disease (HD) was selected by the U.S. Food & Drug Administration (FDA) as one of only 20 diseases that would have a Patient-Focused Drug Development meeting scheduled before 2016.    The purpose of this meeting is to educate the drug regulators about the symptoms of HD that matter most to patients and families, provide perspectives on current approaches to treat HD symptoms, and discuss the risks patients are willing to accept in a potential new HD treatment.

We’ve just learned that the meeting focused on Huntington’s disease will be held on Tuesday, September 22, 2015 from 9:00 a.m. – 12:30 p.m. at the FDA offices in Silver Spring, Maryland.

This meeting is an exciting opportunity for HD Patients and Caregivers to bring their voices directly to the FDA and the drug development process. Registration for this important meeting closes on September 14, 2015, but we encourage you to sign up today as space may be limited.

You can register to attend in person or online at https://pfddhuntingtonparkinson.eventbrite.com

The meeting format maximizes patient participation. For each discussion topic, a small panel of patients or caregivers will provide brief comments to start the dialogue. The panel comments will be followed by a facilitated discussion with others in the audience. HD Patients and Caregivers who would like to be considered for a panel can indicate that as part of their meeting registration using the link above. You will be asked to send a short summary of your responses to the discussion questions specific to HD that are posted on the registration site to PatientFocused@fda.hhs.gov.

We at HDSA are very excited for this great opportunity to meet with the people who will ultimately determine the next therapies for HD. Please help us fill the room and be heard!

For more information about the meeting, go to: http://www.fda.gov/Drugs/NewsEvents/ucm451807.htm or feel free to contact Jennifer Simpson at HDSA at jsimpson@hdsa.org. Stay tuned for more news as September approaches!

Share Tweet

Share a link