Jun 18 2026
Findings From the Institute for Clinical and Economic Review (ICER) Now Available

Advocacy can take many forms, but what stands out most with each opportunity is the incredible engagement rate and impact of raised voices.

Earlier this year, Wake Up Narcolepsy was invited to participate in discussions hosted by the Institute for Clinical and Economic Review (ICER), an independent nonprofit organization that evaluates the clinical and economic value of healthcare innovations. 

It is truly an honor to amplify voices and take part in perspectives being heard and accurately represented. When ICER first inquired, the immense level of WUN community response effectively halted further outreach efforts. On May 14th, an ICER public meeting was held, serving as a powerful example of advocates and experts coming together. Community participation helped ensure that the real-life impact of Narcolepsy remained at the center of the conversation and brought the patient perspective to life in a meaningful way. 

Thank you to everyone who participated, shared, listened and supported these efforts! Your insight deepened the conversation and reinforced the urgent needs of Narcolepsy patients and families. The snapshot from ICER summarizing their findings, along with other materials from the public meeting can be found on their website.

Centering patient input in conversations and decisions about care and access to treatment is an ongoing effort that still needs our attention. We encourage our community to stay engaged in future opportunities to advocate, educate and ensure that the experiences of people living with Narcolepsy continue to be heard.