Sleep Consortium, Inc.

This year, the Sleep Consortium released Patient Guidelines for Central Disorder of Hypersomnolence. In the specific symptomology, etiology, and clinical presentation chapter, we define central disorders of hypersomnolence (CDoH). Here is a short preview of idiopathic hypersomnia. If you want to learn more, click here to access the guidelines - https://lnkd.in/eqWxmpcU #CDoH #centraldisordersofhypersomnolence #idiopathichypersomnia #KleineLevinSyndrome #narcolepsy #cataplexy #sleeprelateddisorders #idiopathichypersomnolence #hypersomnolence #sleepconsortium

In our Patient Guidelines for Central Disorder of Hypersomnolence, we also have these helpful infographics that guide us on habits we can create in our nightly routine that will help us have better sleep hygiene. If you want to learn more, click here to access the guidelines - https://lnkd.in/eqWxmpcU #CDoH #centraldisordersofhypersomnolence #idiopathichypersomnia #KleineLevinSyndrome #narcolepsy #cataplexy #sleeprelateddisorders #idiopathichypersomnolence #hypersomnolence #sleepconsortium

This year, the Sleep Consortium released Patient Guidelines for Central Disorder of Hypersomnolence. In the specific symptomology, etiology, and clinical presentation chapter, we define central disorders of hypersomnolence (CDoH). Here is a short preview of Narcolepsy type 2 (without cataplexy). If you want to learn more, click here to access the guidelines - https://lnkd.in/eqWxmpcU #CDoH #centraldisordersofhypersomnolence #idiopathichypersomnia #KleineLevinSyndrome #narcolepsy #cataplexy #sleeprelateddisorders #idiopathichypersomnolence #hypersomnolence #sleepconsortium

The Sleep Consortium, in collaboration with a coalition of partner organizations and sponsors, is pleased to announce the Illuminate Hypersomnia Adjunct Scientific Meeting, scheduled for February 13, 2025, from 12:00 – 2:00 p.m. EST. This virtual scientific session aims to address critical challenges in drug development for idiopathic hypersomnia (IH), as identified during the groundbreaking Illuminate Hypersomnia Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting held on April 11, 2024. The Illuminate Hypersomnia Adjunct Scientific Meeting will bring together experts in the fields of sleep medicine, pharmaceutical research, regulatory science, medical affairs, and patient advocacy. The focus will be on collaborative efforts to overcome key hurdles in the development of effective treatments for IH, a rare chronic neurological disorder characterized by excessive daytime sleepiness (EDS, or hypersomnolence), extreme difficulty waking, abnormally long nocturnal sleep, unrefreshing naps, and autonomic and cognitive symptoms. You can read the full press release here - https://bit.ly/3Z6jpTx You can register for the Illuminate Hypersomnia Adjunct Scientific Meeting here - https://lnkd.in/ezvDE-vr

This year, the Sleep Consortium released Patient Guidelines for Central Disorder of Hypersomnolence. In the specific symptomology, etiology, and clinical presentation chapter, we define central disorders of hypersomnolence (CDoH). Here is a short preview of Narcolepsy type 1 (with cataplexy). If you want to learn more, click here to access the guidelines - https://lnkd.in/eqWxmpcU #CDoH #centraldisordersofhypersomnolence #idiopathichypersomnia #KleineLevinSyndrome #narcolepsy #cataplexy #sleeprelateddisorders #idiopathichypersomnolence #hypersomnolence #sleepconsortium

In our Patient Guidelines for Central Disorder of Hypersomnolence, we also have these helpful infographics that clearly guide us on boundaries we can create in our daily habits that will help us have better sleep hygiene. Click here to access the guidelines - https://lnkd.in/eqWxmpcU #CDoH #centraldisordersofhypersomnolence #idiopathichypersomnia #KleineLevinSyndrome #narcolepsy #cataplexy #sleeprelateddisorders #idiopathichypersomnolence #hypersomnolence #sleepconsortium

This year, the Sleep Consortium released Patient Guidelines for Central Disorder of Hypersomnolence. These guidelines are designed to offer patient guidance and education on central disorders of hypersomnolence (CDoH), including narcolepsy, idiopathic hypersomnia, and Kleine-Levin syndrome. They offer a comprehensive description of each sleep disorder, including diagnostic practices and treatment options– increasing understanding for people living with CDoH, shared decision making with healthcare providers and effective disease management. Click here to access the guidelines - https://lnkd.in/eqWxmpcU #CDoH #centraldisordersofhypersomnolence #idiopathichypersomnia #KleineLevinSyndrome #narcolepsy #cataplexy #sleeprelateddisorders #idiopathichypersomnolence #hypersomnolence #sleepconsortium

Unsure about joining the DREAMS Portal? We'll be doing a series highlighting the most frequently asked questions. Who can participate in this Program? Any person diagnosed with a rare diseases/disorders or their family member/legal guardian. Even if a patient has passed away, their data still has tremendous value to researchers and may help future patients. Be part of history-making advancements by joining the DREAMS portal. Register at https://lnkd.in/guepwmKU. #DREAMSportal #BeCounted #CDoH #centraldisordersofhypersomnolence #idiopathichypersomnia #KleineLevinSyndrome #narcolepsy #cataplexy #sleeprelateddisorders #idiopathichypersomnolence #hypersomnolence #sleepconsortium

Last call to have your central disorders of hypersomnolence experience included in the year-end insights data pull. Join the DREAMS Portal now to have your voice heard. The quest to further patient-owned data to accelerate research and the development of new drugs, devices, and other therapies is not over. Register and complete the 5 priority surveys by October 31. Register at: https://lnkd.in/guepwmKU. #DREAMSportal #BeCounted #CDoH #centraldisordersofhypersomnolence #idiopathichypersomnia #KleineLevinSyndrome #narcolepsy #cataplexy #sleeprelateddisorders #idiopathichypersomnolence #hypersomnolence #sleepconsortium Hypersomnia Foundation Hypersomnolence Australia Project Sleep PWN4PWN Global Genes RARE-X

Why join the DREAMS Portal? Here’s what Dr. Anne Marie Morse, the director of the pediatric sleep medicine and child neurology programs at Geisinger Medical Center, has to say. “We want to be able to augment the knowledge and awareness around central disorders of hypersomnolence, so that we're able to do things like reduce the time to diagnosis. Currently, it is about eight to 10 years for most individuals who experience this disorder, and sadly, there's up to a third of individuals who may be experiencing a delay in diagnosis of almost two decades, and women were unfortunately more likely to suffer that consequence. This, many times, results in an increased burden of living with these conditions, many times resulting in misdiagnoses and even the potential of developing true medical comorbidity, meaning having other disorders just because of the fact that we in medicine have failed to be able to recognize the right diagnosis. By participating in an effort like this, helps us to understand that lived experience and not just stop at improving our knowledge and awareness but also creates the potential of accelerating the opportunity to identify new therapeutic interventions that can be transformative for individuals who are living with these conditions.” Your medical history is real world data. Your data will improve care. Join the DREAMS portal by registering at https://lnkd.in/guepwmKU. #DREAMSportal #BeCounted #CDoH #centraldisordersofhypersomnolence #idiopathichypersomnia #KleineLevinSyndrome #narcolepsy #cataplexy #sleeprelateddisorders #idiopathichypersomnolence #hypersomnolence #sleepconsortium