Narcolepsy Network Appoints New Executive Director
She brings over 20 years of nonprofit leadership and personal rare disease experience to guide the patient advocacy group.
Tag: Patient Advocacy
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Patients with Neurostimulators Harness the Power of Community
Online support groups emerge as crucial resources for sleep apnea patients using neurostimulator treatments.
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People Who Used Recalled Philips Breathing Machines Face Painful Choices
Millions of people were impacted by the 2021 recall of Philips breathing machines. Here are nine of their stories.
‘Take the Nap Before the Nap Takes You’: 5 Perspectives on Napping for Narcolepsy Patients
Exactly how, when, and for how long a person with narcolepsy should nap to manage their disorder varies. Sleep physicians, patients, and advocates detail the nuances of how to navigate scheduled daytime sleep.
Read MoreAvadel Launches ‘Narcolepsy Disrupts’ in Time for World Narcolepsy Day
The company recently launched Narcolepsy Disrupts, a narcolepsy awareness campaign for patients, their loved ones, and healthcare providers about the importance of prioritizing more natural sleep patterns.
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AASM Installs Its 36th President
One of the new president’s priorities will be to give patients a greater voice within the AASM by leading a new Patient Advocacy Roundtable.
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Survey: Only 29% of People with RLS Say Sleep Disorder Is Controlled on Current Treatment Plan
Four in 10 don’t feel treatment options are clearly explained and 45% aren’t in complete agreement with their HCP on their RLS severity.
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Mentors for Sleep Disorders Patients Available Via New Program
The American Alliance for Healthy Sleep (AAHS)—a nonprofit collaboration launched by the American...
Read MoreHypersomnia Foundation Chooses Researcher Whose Work Will Focus on Inflammation’s Role in Excessive Daytime Sleepiness for Its First Research Award
The Hypersomnia Foundation, a nonprofit patient advocacy group dedicated to improving the lives of people with idiopathic hypersomnia and other rare sleep disorders, has chosen the first recipient of its new Research Award...
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Absence of Cataplexy, Pediatric Onset Increase Odds of Delayed Narcolepsy Diagnosis
A Wake Up Narcolepsy study asks patients about their diagnosis experience, most burdensome...
Read MorePatients Can Download Narcolepsy App to Record Symptoms, Learn Disorder Facts
Available in the Apple App store, Narcolepsy Advocacy Center by patient advocate Julie Flygare is a HIPAA-secure way for patients to record their daily symptoms and facilitate conversations with their treating health professional.
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Narcolepsy Patients Report Cyclical Nature to Symptoms
Some narcolepsy patients notice a cyclical pattern to their symptoms, noticing a worsening during...
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“Narcolepsy Goes to School” Program Educates Educators on Condition’s Symptoms
Narcoleptic symptoms often begin in childhood or adolescence and can greatly disrupt every element of a child’s educational experience, including academics, social development, and athletics.
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“Narcolepsy: Not Alone” Campaign Shares Real Faces of the Sleep Disorder
Awareness campaigns have the potential to make a true difference. To wit, the “Ice Bucket Challenge” has raised $88.5 million in donations so far to the The ALS Association.
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Wake Up Narcolepsy Awards Another $50,000 to Dr Emmanuel Mignot
Wake Up Narcolepsy Inc (WUN), a nonprofit organization working to speed diagnosis of narcolepsy...
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Changing the Face of Sleep Apnea
MyApnea.org, an ambitious new online network backed by a million dollar grant, will have 50,000 members within the next 18 months. Powered by patients, this site has the potential to change how patients, professionals, and the public understand obstructive sleep apnea.
Read MoreNarcolepsy Author Wins WEGO Health Activist Award
The WEGO Health Activist Awards were created to empower health activists. “We connect with so many inspiring health activists who raise awareness, share information, support their communities, and much more–often...
Read MoreEditor’s Message: Enlisting the Patient Advocate
If sleep centers are going to continue treating Medicare patients, the reimbursement trend will have to change.
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