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Listening Journey: Our Collective Voice Matters

May 31st, 2022

Last year, Narcolepsy Network began a “Listening Journey” to better understand our organization’s individual and collective interests. We also sought out the perspectives of medical professionals and industry partners. The Listening Journey project included interviews, focus and ad hoc working groups, and feedback from our ongoing educational and support programs. Here is what we learned:

Listening Journey: Our Takeaways

  • Advocacy and community is the heart and soul of Narcolepsy Network. We are accountable to the collective narcolepsy patient voice and our supporters wherever they are along their individual journeys.  We represent that collective voice to ensure as many voices as possible will be heard.

  • Why a membership-governed patient organization matters. Our members represent a powerful voice for the future of new therapies and improved access to healthcare.  Industry and medical sectors each have their own set of unique interests, so we set policies that support an unconflicted approach and that honor our shared interests.

  • Working with the medical community matters. Clinicians and medical providers are at the center of diagnosing and treating narcolepsy.  Narcolepsy Network is the oldest and largest patient advocacy organization. Our ability to work with medical advisors is essential to providing therapeutic, education, and awareness resources to a greater number of clinicians and to patients across the United States. These efforts contribute to a deeper understanding of narcolepsy and can help to shorten the time to diagnosis.

  • Understanding and engaging in research matters.  Research and patient engagement are playing a critical role in informing the future for novel therapies. Our ongoing clinical update programs educate people with narcolepsy and their supporters.

  • Continued industry investment and narcolepsy community engagement is important. Working with industry requires guidelines that are unbiased so that no one commercial interest, and no one set of patient interests define the market–this preserves patient choice. We encourage engagement with patients and coalition building, while at the same time respecting patient privacy and professional boundaries separate from commercial interests.

  • Support is essential. Our support system helps people learn from one another.  We run a Facebook support group as well as weekly virtual support groups on Zoom to provide people with narcolepsy and their supporters a platform to share their experiences. Popular topics for discussion include how to live with narcolepsy, how to advocate for yourself, mental health concerns, understanding barriers to healthcare, navigating clinical care, and more.  We also provide support to others who run peer-led support groups across the country.

  • Awareness of narcolepsy is critical. Sharing experiences brings awareness to people who do not have narcolepsy. By providing storytelling and self-advocacy resources, we empower people with narcolepsy to raise awareness within their sphere of influence.This informs Society about individual and collective experience, the patient journey, and may also shorten the time of diagnosis. 

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Date Created: May 31st, 2022
Last Updated: June 1st, 2022