There are a lot of useful web sites on the 'net and there is also a lot of, well, junk. Misinformation abounds. If we've posted a link here it's been checked out by us as being okay.
One place to visit on the 'net to get information on narcolepsy as well as a supportive community is Claire Metters'
Narcolepsy / Cataplexy Education Focused Group on FaceBook.
Find it at
Be sure to visit there.
Kasha Oelke has a site called Hypersomnolence Hub, covering a wide variety of sleep disorders. You can find it at www.hypersomnia.info
Michelle Weger and Becky Bodnar have a useful site for Canadians with Narcolepsy. Their web site is www.narcolepsycanada.com
You don't have to be down under to get a lot out of Michelle Chadwick's terrific web site for Hypersomnolence Australia. Very well done, chock full of content. Visit there at www.hypersomnolenceautsralia.com
We were recently made aware of these folks, who are from what I understand doing a slam bang job of helping people manage the various administrative aspects of being ill:
The Patient Advocate Foundation (PAF) is a national 501 (c)(3) non-profit organization which provides professional case management services to Americans with chronic, life threatening and debilitating illnesses. PAF case managers serve as active liaisons between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters as they relate to their diagnosis also assisted by doctors and healthcare attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
You can find them at: http://patientadvocate.org
Got an issue with your employer? Need an accommodation? Try the aptly named Job Accommodation Network. According to them, they are "the leading source of free, expert, and confidential guidance on workplace accommodations and disability employment issues." They're at: