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Important Updates on the Duchenne Policy Forum

Due to overwhelming interest in PPMD’s Duchenne Policy Forum on December 12 in Silver Springs, MD, registration is now closed. We are at capacity and unfortunately there will be no onsite registration due to space restrictions.

We are pleased to share with you the detailed agenda which outlines the topics to be covered at this meeting. We also want to share with you important logistical information and FAQs we have compiled after discussions with the FDA. It is imperative to remember that this is a unique opportunity for the Duchenne community and one that PPMD wants all stakeholders to take full advantage of. In order to be effective, we need to be respectful of everyone in attendance. The information and data presented, and the stories shared by community members, will help inform the development of a draft guidance on Duchenne for the FDA that reflects the combined experience and wisdom of the Duchenne community.

Submitting Questions

There is still time to submit your question to the presenters and invited guests of the Duchenne Policy Forum. To submit your questions, email info@parentprojectmd.org, RE: Duchenne Policy Forum. All questions must be submitted by 2pm eastern, Monday, December 9.

Many of you have already submitted questions which have been compiled, shared with the FDA, and can be read here.

We expect that questions and comments will arise during the meeting that you may not have submitted ahead of time. Each session will have a time-limited open comment period where attendees will have the opportunity to ask brief questions. More information about the open comment period can be found in the FAQs. If you are not attending the Duchenne Policy Forum, but would like to share your story with the FDA, please visit our Share Your Story page and submit your comments online. The FDA will be given access to all stories submitted online. Stories that have been submitted can be read here.

Unable to attend? Join us via live webcast

If you did not register in time or are unable to attend, we hope you will watch this historical event via our live webcast. More information on streaming can be found here.

Also, PPMD’s Vice President of Research Sharon Hesterlee, PhD, will be live tweeting from the meeting. You can follow her on Twitter using @ParentProjectMD, #DuchenneForum. We will also post a blog recapping the meeting on 12/13.

Thank you to our sponsor

PPMD would like to thank John Owen’s Adventure, Inc., for their support of the Duchenne Policy Forum. JOA and the Dumm family have been longtime supporters of PPMD and we are so fortunate to have their sponsorship for this important meeting.

For those of you coming to the Duchenne Policy Forum, we look forward to seeing you on December 12 and appreciate you making the journey. For those of you unable to attend, we hope you will be able to follow what is happening via one of the methods listed above.

Important links

Duchenne Policy Forum agenda

Important logistical information and FAQs for attendees

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