Welcome to Everything Narcolepsy!

This website's 
goal is to reduce the misdiagnosis & mistreatment of narcoleptics though the promotion and sharing of narcolepsy information and resources found throughout the internet.

Hey early bird! This new website is still under construction.
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Narcolepsy Links Database






Genetic and Rare Diseases (GARD) Information Center


Greater Little Rock Narcolepsy Support Group 


Mayo Clinic 


Macalester College Narcolepsy Site

 

Midwest Narcolepsy Support Group for people in Minnesota & Wisconsin 


Narcolepsy and Overwhelming Daytime Sleep Society of Australia 


Narcolepsy Association UK (great newsletters)


Narcolepsy Austria Organization 


Narcolepsy Indiana Support Group 


Narcolepsy Institute 


The Narcolepsy Network Support Group of San Diego County 



Narcolepsy Spanish Language Support Website


Narcolepsy Support Groups


Narcolepsy Symptom Treatment Org  


National Center on Sleep Disorders Research – National Heart, Lung, and Blood Institute, NHLBI Information Center


National Institute of Neurological Disorders and Stroke 


National Sleep Awareness Round Table

 

National Center on Sleep Disorders Research 


National Sleep Foundation 

Sleep Disorders Guide 


Sleep Foundation Canada 


Sleep Wake Disorders Association North York (Toronto) Chapter 



Stanford sleep and sleep disorder outreach program


Talk About Sleep - info, store, and online community


UCLA Center for Sleep Research


University of Illinois Center for Narcolepsy Research and Support 



 


Narcolepsy Online Communities

The Sleep Well

MDJunction's Narcolepsy message boards 

Narcolepsy Network Forums

Daily Strength Narcolepsy Forums

Talk About Sleep online community 

Narcolepsy Support Groups 

Sleep Net 

Pillow Talk - Nat. Sleep Foundation Forums

Sleep Foundation Narcolepsy Group

 

This website encourages all Narcoleptics to blog

about their condition and their lives.


Remember how lost, confused, and alone you were before you and your loved ones had the right diagnosis? For every person like you there are 3 other Narcoleptics who have no idea what the real cause of their symptoms is. Somewhere out there are 3 people who are going through a depressing misdiagnosed journey and it's ridiculous how nearly identical their experiences are to what you went through. You can be for there them! You can be the helpful guide you wished you had back then, but NOT if your keep your Narcolepsy journey a secret!

Blog about your own Narcolepsy journey, not just once but often. Be honest, share the good and the bad, what worked for you, what didn't, the awkward, and the triumphant experiences you've had in the past and still have today. Share your tips and tricks to living with Narcolepsy and all the ways Narcolepsy impacts your life.


When you are ready, let us know about your blog so we can add it to our list and help the people who need your blog, find your blog. Your blog can help inspire and change the lives of maybe just one or maybe thousands of lives. The people who will learn the most from your blog may not find you right away, maybe it will be years down the road, but everyday you will be able to know you are actively doing your part to help people learn about and understand Narcolepsy. The more people who know about Narcolepsy, the more Narcoleptics who will be accurately diagnosed. And the more people who understand Narcolepsy, the safer and kinder the world will be for Narcoleptics.


Narcolepsy Blogs

Sleeping Around: Adventures in Narcolepsy 

Writings of a REM Sleeper

 

Disabled and Thriving

Is your blog ready to be added? Email: NantucketFog a t aol .com the link. 



 

 

 

Advocacy for Patients with Chronic Illness, Inc. - Info, advice, and advocacy services in areas including but not limited to the following: how to get your own medical records, how to get and keep health insurance, how to get health insurance coverage for particular treatments, drugs, and/or therapies, how to assert your rights under the Americans with Disabilities Act and the Family and Medical Leave Act, and how to ensure that schools accommodate students with chronic illnesses.


Band-aides and Blackboards is a site about growing up with medical problems. Its goal is to help people understand what it's like, from the perspective of the children and teens who are doing just that. 


Exceptional Parent Magazine - parenting those with disabilities or special needs.


The Family Resource Center on Disabilities - provides parents of children with disabilities with information, training, assistance, and support.


Family Voices - aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care. 


Federation for Children with Special Needs


Life Services - helps families plan for the time when they will no longer be here and provides direct services to disabled people whose families have left assets for their care. http://www.disabledandalone.org/home.html


MetLife Center for Special Needs Planning - helps you to take steps to provide lifetime quality care that your dependent with special needs requires.


The M.O.R.G.A.N. Project - non-profit organization that promotes awareness and support of parents caring for their special-needs children, and works to enhance the quality of life for these special families.


The MUMS (Mothers United for Moral Support, Inc.) - National Parent-to-Parent Network is a non-profit support organization that matches parents with other parents whose children have the same disabilities. 


The National Dissemination Center for Children with Disabilities - provides information to the nation on: disabilities in children and youth; programs and services for infants, children, and youth with disabilities; IDEA, the nation's special education law; No Child Left Behind, the nation's general education law; and research-based information on effective practices for children with disabilities.


The National Parent Network on Disabilities (NPND) advocates for all families of children, youth and adults with disabilities. npnd@aol.com - Serves as referral agency for Parent Training and Information Centers funded by the U.S. Department of Education


Parents Helping Parents (PHP) is a non-profit, community-based, parent-directed family resource center. PHP provides lifetime guidance, supports and services to children with any special need, their families and the professionals who serve them.


Parentpals.com Special Education Guide - a special education community where parents and professionals share information and offer support.


The Stages of Grief in Learning You or Your Child has Special Needs by the special education adviser and Psychosocial Difficulties of Parents with Young Children with Disabilities and check out this blog where a mother of a disabled child discusses chronic grief.


Through the Looking Glass
 - Their mission is "To create, demonstrate and encourage non-pathological and empowering resources and model early intervention services for families with disability issues in parent or child which integrate expertise derived from personal disability experience and disability culture."  


The United Healthcare Children's Foundation - non-profit charity dedicated to facilitating access to medical-related services that have the potential to significantly enhance either the clinical condition or the quality of life of the child and that are not fully covered by the available commercial health benefit plan. 




 

Sleep Science

 General Overviews of Sleep Disorders

Thrillers of the Night - sleep disorders video

Sleep Disorders Overview by Psychology Today

Sleep Disorders Overview by the NYTimes

Your Sleep


Chronic Fatigue Syndrome

The Stigma of Chronic Fatigue Syndrome

 

 

Circadian Rythem Disorders

Delayed Sleep Phase Syndrome

Delayed Sleep Phase Syndrome 


Idiopathic Hypersomnia

Idiopathic Hypersomnia Org 


Insomnia

"Do I Have Insomnia?"

Overcoming Insomnia Without Medication

Why You Shouldn't Sleep with Your Pets

 

Pediatric Sleep Disorders

Pediatric Sleep Disorders 

The Restless Legs Syndrome Foundation 


REM Behavior Disorders

Restless Leg Syndrome

Understanding Restless Legs Syndrome (video) 

Periodic Limb Movement Disorder 

 

Sleep Apnea

NY Times "Voices of Sleep Apnea"

American Sleep Apnea Association

Sleep Guide's Sleep Apnea Community 

What Causes Sleep Apnea 

Obstructive Sleep Apnea

CPAP Central 

Manhattan A.W.A.K.E., NY Sleep Apnea Support Group 


Sleep Debt

Stanford's Most Wanted - parody video about sleep debt


MISC

Health Science Channel Narcolepsy video 

Chronic Low Body Temperature 

Johns Hopkins Memory Health Alerts

 

 

Online Communities Connecting People with Disabilities

Audacity Magazine- a news and entertainment magazine geared toward the disabled community in the United States and the world. 


Disabled Online - online community topics and resources for people with disabilities, their family and friends.


Invisible Disabilities Community - A great social network for people touched by illness, pain and injury.


Additional Resources for People with Disabilities

Ability Magazine - News and resources related to assistive technology, medical research, the ADA, personal empowerment and employment for individuals of all ages with a mental or physical disability.



American Pain Foundation - Nonprofit consumer education and advocacy organization.


disABLED person.com - Resources and employment opportunities.

disABILITIES Organization - info. & resources


Disabled World - Disability news, information, and resources.


Disaboom - Information and resources for people living with a disabilities


Enabled Online - News of people with disabilities, special reports, and opinions.


Healing Well - Chronic illness community, support, and resources.


Inclusion Daily Express- International daily disability rights news service


Rocky Mountain ADA Center - Rocky Mountain ADA Center is one of 10 regional centers funded by the National Institute on Disability and Rehabilitation Research


The Seven Stages of Grief by Livestrong


WheelchairNet The site is intended for people who have an interest in wheelchair design. 



Disability Rights and Information Links

*Enormous list of invisible disability links and info


ADA 


ADAPT Disability rights activism



American Autoimmune Related Diseases Association Inc - Non profit health agency dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity.


American Society for Action on Pain (ASAP): Includes links to other pain-related websites including several that are fighting for the rights of chronic pain sufferers. Includes Shaffer Drug Library



Caring Voice Coalition Inc - Support for people with Narcolepsy


The Council for Disability Rights - Advancing rights and enhancing lives of people with disabilities 



Disability gov - Connecting the disability community to information and opportunities



Employers’ Forum on Disability - UK organization focused on disability as it affects business. 



Equal Employment Opportunities Commission's Americans with Disabilities Act 



Interagency Committee on Disability Research


Invisible Disabilities Association - Advocacy, information, and invisible disabilities education. Books, articles, enormous links database, videos and more


The Job Accommodation Network - JAN helps people with disabilities enhance their employability, and show employers how to capitalize on the value and talent that people with disabilities add to the workplace. http://askjan.org/media/sleep.html


National Council on Disabilities - Independent federal agency committed to disability policy leadership



National Organization on DisABILITIES - Focused on increasing employment opportunities for the 79 percent of working-age Americans with disabilities who are not employed.



Occupational Safety and Health Administration (OSHA)


Open Doors Organization - Opening doors for people with disabilities in travel and tourism


Office of Disability Employment Policy is part of the United States Department of Labor and envisions a world in which people with disabilities have unlimited employment opportunities.


Patient Advocate Foundation - Solving insurance and healthcare access problems



TASH is an international organization of members concerned with human dignity, civil rights, education, and independence for all individuals with disabilities.




SSDI Resources

Allsup - A social security disability representation and Medicare plan selection service


Articles by an attorney about filing for Social Security Disability


Disability Facts - Info for Social Security Disability Applicants


Disability Insurance Issues resources and links


Disability Secrets com provides tips, advice, explanations, and answers on Social Security Disability benefits.


Health Care Financing Administration (HCFA): Medicare and Medicaid information.


National Organizations of Rare Diseases Medicade/Medicare info and resources


Social Security Administration: Disability Information (How to apply, who qualifies, reviews, appeals, etc)



Talk About Sleep's Short Course on SSDI



Healthcare Access Assistance Programs

Financial and Medication Assistance Resources for people with rare diseases


Financial aid and Medicaid/Medicare info and links for people with rare diseases


The Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services, is the primary Federal agency for improving access to health care services for people who are uninsured, isolated or medically vulnerable.



The Low Income Home Energy Assistance Program - (LIHEAP) assists low income households meet their immediate home energy needs. LIHEAP is a program of the Administration for Children and Families within the U.S. Department of Health and Human Services.


National Foundation of Dentistry for the Handicapped (NFDH); a charitable affiliate of the American Dental Association; is committed, through collaboration, to arrange comprehensive dental treatment and long-term preventive services to needy disabled, elderly or medically compromised individuals.


Needy Meds - Find help with the cost of medications



Miscellaneous Links

Ready gov - Check out the guide for disaster preparedness. Having a plan for what to do if your evacuated or your community is without power or water for weeks is important, especially for a Narcoleptic - and don't forget to store enough weeks worth of medications in that home disaster kit!


7 Stages of Grief: My Spouse's Journey through the 7 Stages of Grief - Coping with the chronic illness of a partner.


Chronic Grief explained




American Narcolepsy Network

Swiss Narcolepsy Organization 

UK Narcolepsy Association (great newsletters)

More international Narcolepsy organizations

Web Hosting Companies