Providing high-quality, timely information to people with hypersomnias, their supporters and health care providers.
In June 2020,
HF unveiled a new website, which was reorganized to improve access to our wealth of free resources designed to meet the needs of people with hypersomnias and the people around them who are essential in their care. The website included new pages designed specifically for 1)
Newly Diagnosed; 2)
Patients & Supporters; 3) and
Healthcare Providers.
In the preceding years, we made significant updates to our pages on the
Classification and
Treatment of
hypersomnias, prepared by Dr. Lynn Marie Trotti, the Chair of our
Medical Advisory Board. We updated our
IH Summary to include diagnostic criteria, along with the characteristics of IH. Several new guides and tools were developed for our
Education Essentials for Students webpage, providing a wealth of information for maximizing student success while living with a hypersomnia. And we developed many new resources, including
How to Choose a Healthcare Provider, a
Medical Alert Card, an
Anesthesia and IH Guide, a
Self-Advocacy Tips handout, and more (see the
Resources tab on the HF homepage).
Conferences and in-person educational forums for people with hypersomnias and their supporters are another important avenue for sharing information and building up the patient community. For the safety and well-being of our patient community, presenters, and others, HF’s 2020 conference, planned for June in Philadelphia, was cancelled due to the COVID-19 pandemic. During the most recent year, 2019,
HF sponsored educational events in Seattle and Chicago. Since 2015, HF has held four conferences—in Atlanta (2015), Denver (2016), Boston (2017) and Baltimore (2018). Our seminal Baltimore conference, in particular, gathered some of the world’s top
hypersomnia experts and cutting-edge researchers. It was very well-attended and raised the profile of
IH and related disorders among pharmaceutical companies, researchers, and sleep medicine professionals.
We continuously share our free resources, conference videos, research updates,
personal journey stories, and more via an e-newsletter, an expansive social media footprint, and other events. As always, HF is the leading nonprofit providing hypersomnia information and resources for patients, their supporters and medical professionals.