Calling all narcolepsy advocates!
Does narcolepsy affect you or a loved one? The Food & Drug Administration (FDA) wants your input to help shape the future of narcolepsy treatment. Unite Narcolepsy offers various opportunities for patients, parents, spouses and caregivers to get involved today!
Take the survey
Unite Narcolepsy has developed a confidential anonymous survey based on the questions FDA has asked about symptoms and treatment. Results will be analyzed for important similarities and differences within the patient community to report to FDA. (Takes about 15-20 minutes to complete). Deadlne: Nov. 11, 2013. Begin survey here.
Participate in a Webinar
Unite Narcolepsy is offering an exciting free webinar series. What is a Webinar?
- Thursday, Aug. 29, 2013 at 2 p.m. EDT - Introducing the Unite Narcolepsy Initiative
An exciting discussion about all the ways that you can contribute to this landmark opportunity! Watch recording here.
- Thursday, Sept. 5, 2013 at 2 p.m. EDT – Patients at the Center: The FDA’s Patient-Focused Drug Development Initiative
Learn more about how drugs are developed and approved and why the FDA is highlighting narcolepsy as part of its Patient-Focused Drug Development Initiative. Watch recording here.
- Wednesday, Sept. 11, 2013 at 2 p.m. EDT – Harmony: Putting Your Best Voice Forward
Polish you advocacy skills! We’ll review the purpose of the FDA’s invitation for patient testimony and cover best practices for communication and advocacy in this and other policy settings. Watch recording here.
- Thursday, Sept. 19 at 2 p.m. EDT – “Put Me In, Coach!”
Our coaching team will help people planning to participate in the Sept. 24 FDA Workshop. Watch recording here.
- Thursday, Oct. 10 at 2 p.m. EDT – Wrap Up Webinar
Recap the FDA meeting, review ways that patients and other stakeholders can offer their perspective to the agency, and look ahead at ways to sustain the positive momentum.
Register here: https://attendee.gotowebinar.com/register/5747469788803640834
Spread the word on Social Media
For once, the patient’s voice is front and center. Go online to meet other advocates across the narcolepsy community looking to build a brighter future. You can share your experience and make new friends and connections. Get together, get empowered and make a difference! Like us on Facebook Page & follow us on Twitter @UniteNarcolepsy (use #PatientFocused and #Narcolepsy).
In-person & Webcast Meeting
Thank you for your interest in participating in the Sept. 24, 2013 FDA Meeting in-person or via webcast. Registration closed on Sept. 13, 2013. View Meeting Re-cap
Submit Comments to FDA
All interested members of the public, including those who attended the meeting in person or via webcast, are encouraged to send in responses to FDA’s questions via the public docket. Docket Closes on Nov. 25, 2013. Step-by-step instructions for commenting here.