Have you ever searched for advice on getting comfortable using a CPAP machine? Have you Googled ways to help your child manage a sleep disorder?
You’re not alone. Many people look for resources about sleep disorders that can’t always be found at the doctor’s office.
That’s where patient advocacy organizations come in. These groups help patients and their families navigate confusing issues and provide education and support.
Now, the American Academy of Sleep Medicine (AASM) is partnering with top patient organizations to create a Patient Advocacy Roundtable.
“There’s a lot we can learn from our patients about the challenges they face every day,” said AASM President Raman Malhotra, MD. “It’s not just the physical effects of their sleep disorder, but struggles like navigating a complex health care system, dealing with insurance, or managing expectations at work or school. Patient advocacy groups understand these barriers.”
The organizations participating in the new roundtable will collaborate on activities to improve awareness, advocacy, education, and care.
Another bonus of the roundtable is the opportunity to provide feedback to the AASM on policies and medical guidelines. By offering feedback based on real patient experiences, organizations can better advocate for people with sleep disorders.
Several organizations are participants in the roundtable, including:
- Alliance of Sleep Apnea Partners
- American Sleep Apnea Association
- Circadian Sleep Disorders Network
- Hypersomnia Foundation
- Narcolepsy Network*
- Project Sleep
- Restless Legs Syndrome Foundation
- Wake Up Narcolepsy
“Bringing patients together with the sleep team in this way allows us to consider innovative solutions that will advance care and address the challenges of living with sleep disorders,” said Malhotra.
Learn more about the Patient Advocacy Roundtable.
*Member as of June 2022
Authored by:
Kate Robards