Over the next several weeks, organizations across the narcolepsy and rare disease community have planned some awesome programs, all with the goal of educating, engaging and empowering people affected by narcolepsy to share their experiences with FDA decision-makers and others who are ready to listen. Unite Narcolepsy events are free and open to anyone who’d like to participate. We’ll make every effort to record our webinar programs and provide links to the archive for on-demand viewing. We’ll also update this schedule with new events and links as we learn of them. Please share this page broadly!
Our Webinar Series was a huge success! Watch previous webinars here:
- Webinar 1: Introducing the Unite Narcolepsy Initiative (Recorded Aug. 29, 2013) Watch recording here.
- Webinar 2: Patients at the Center: The FDA’s Patient-Focused Drug Development Initiative (Recorded: Sept. 5, 2013) Watch recording here.
- Webinar 3: Harmony: Putting Your Best Voice Forward (Recorded: Sept. 11, 2013) Watch recording here.
- Webinar 4: “Put Me In, Coach!” (Recorded: Sept. 19, 2013) Watch recording here.
Friday, Sept. 20 at 9 a.m. (Pacific)
- Webinar 5: Wrap Up Webinar (Oct. 10, 2013 at 2:00 p.m. EDT)
Register here: https://attendee.gotowebinar.com/register/5747469788803640834
Global Genes’ Patient Advocacy Summit
Location – The Balboa Bay Club & Resort in Newport Beach, CA ($25) OR by webcast (free of charge)
Description – The RARE Patient Advocacy Summit is to help patient advocates become successful activists and to provide the discussion, insights and tools to move down this advocacy path, equipped and prepared.
More Information & Registration Link — https://globalgenes.org/2013-rare-patient-advocacy-summit/
Tuesday, Sept. 24 at 1 p.m. (Eastern)
FDA Patient-Focused Drug Development Initiative for Narcolepsy Workshop
Location —FDA’s campus in Silver Spring, Maryland OR by webcast
Registration closed on Sept. 13, 2013
View Meeting Agenda: http://www.unitenarcolepsy.org/fda-narcolepsy-public-meeting-agenda/
Read Meeting Re-cap: http://www.unitenarcolepsy.org/fda-hears-narcolepsy-realities/
Watch Webcast Video: http://www.unitenarcolepsy.org/fda-meeting-video-now-available/
Saturday, Oct. 5 at 6:30 p.m. (Eastern)
Wake Up Narcolepsy! Boston
Location – Seaport World Trade Center, Boston, MA
Description — Wake Up Narcolepsy – Boston! is an evening of comic relief, wine tasting and music to benefit narcolepsy awareness hosted by Wake Up Narcolepsy.
Friday, Oct. 18 through Sunday, Oct. 20
28th Annual Narcolepsy Network Conference
Location – Intercontinental Hotel in Atlanta, GA
Description – This annual gathering of patients, family members, physicians and researchers offers registrants the opportunity to hear a variety of speakers addressing medical topics and ways to live more fully in the face of narcolepsy. Julie Flygare will co-lead a session with Dr. Mark Patterson about the FDA’s Patient-Focused Drug Development Initiative and will recap the Sept. 24 FDA workshop, including ways people can still lend their voice to this important advocacy effort.
More Information — http://www.narcolepsynetwork.org/news-and-events/conferences/
Monday, Nov. 11 at 11:59 p.m. (Eastern)
Deadline to participate in the Unite Narcolepsy patient-focused survey
Description — As part of the Unite Narcolepsy initiative we developed a confidential survey based on questions the FDA has asked about symptoms and treatment. The survey link has been shared broadly to ensure that a wide range of experience and impact is represented to the FDA. Survey results will be analyzed for similarities and differences within the patient community and we’ll send a summary to FDA before the Nov. 25 deadline.
Take the Survey: https://www.surveymonkey.com/s/unitenarcolepsy
Monday, Nov. 25 at 5:00 p.m. (Eastern)
Deadline for the FDA’s comment “docket” on narcolepsy
Description – The FDA has posed a series of questions about narcolepsy symptoms and treatment and has invited patients, caregivers and others to respond.
Step-by-Step Instructions for Submitting Comments: http://www.unitenarcolepsy.org/fdas-questions-narcolepsy-community/
Submit Your Comments Directly to FDA: http://www.regulations.gov/#!submitComment;D=FDA-2013-N-0815-0001