On September 24, 2013 the FDA is conducting a Narcolepsy Patient Focused Meeting. Narcolepsy advocates have the chance to educate and influence decision makers regarding treatment options and development. Daily life experiences and struggles with finding the right medical treatment will be conveyed, as well as what it is truly like living with narcolepsy. Personal testimonies can help researchers better understand the complexities and difficulties that PWN's experience.
Look below for ways to get involved! I filled out the survey last night right from my iPhone, it only took about ten minutes.
The following is taken from Julie Flygare's site at www.julieflygare.com
- Take the Survey: People with narcolepsy AND loved ones are invited to take this anonymous confidential survey, based on the FDA’s questions to capture the variations in patients’ experiences (about 15-20 mins to complete). Start survey here.
- Register for the Aug. 29 Webinar: Unite Narcolepsy’s first one-hour webinar will take place on Thursday August 29, at 2:00 p.m. (EDT). Please join us for this exciting “conference via web” – I will be one of the presenters. Register here.
- Spread the word: Connect with other narcolepsy advocates via social media. Like the Facebook Page and follow on Twitter (use #narcolepsy and #patientfocused).
- Attend the Sept 24, 2013 meeting in person or via webcast: The Sept. 24 meeting is open to the public and free to attend, but space is limited so register today (deadline Sept 13, 2013). Both “live” and webcast participants will be invited to get involved in the discussion. Register here.
Everyone’s experience with narcolepsy is unique, so please participate to ensure your voice is represented. Thank you!
So help get the word out! Health & Blessings- Hilary
