Kleine–Levin syndrome

Kleine-Levin Syndrome Foundation Relaunches Medical Advisory Board

Retrieved on: 
Tuesday, January 30, 2024

SAN JOSE, Calif., Jan. 30, 2024 /PRNewswire/ -- The Kleine-Levin Syndrome Foundation today relaunched its Medical Advisory Board to help accelerate scientific understanding about KLS. The volunteer members of the Medical Advisory Board encourage scientific research to advance the search for a cause and a cure for KLS, provide objective medical knowledge to build awareness about KLS, and offer guidance for KLS patients and their caregivers.

Key Points: 
  • Members help encourage scientific inquiry; provide patients evidence-based information and guidance
    SAN JOSE, Calif., Jan. 30, 2024 /PRNewswire/ -- The Kleine-Levin Syndrome Foundation today relaunched its Medical Advisory Board to help accelerate scientific understanding about KLS.
  • "The KLS Foundation Board of Directors is grateful for the extensive knowledge and expertise of these respected researchers and clinicians," said Kleine-Levin Syndrome Foundation President Steve Maier, who experienced 18 KLS episodes from age 13-27.
  • "The Medical Advisory Board will provide the evidence-based guidance sought by so many KLS patients and their caregivers."
  • The relaunched Medical Advisory Board is composed of experts who volunteer their time and knowledge in many medical disciplines relating to KLS, including sleep disorders, neurology, and psychiatry.

Project Sleep Launches the Sleep Helpline™ to Provide Free and Personalized Support for People Facing Sleep Issues and Sleep Disorders

Retrieved on: 
Wednesday, December 6, 2023

LOS ANGELES, Dec. 6, 2023 /PRNewswire/ -- Project Sleep, a nonprofit dedicated to raising awareness of sleep health, sleep equity, and sleep disorders, is thrilled to announce the official launch of the Sleep Helpline™, a new, professionally-staffed national helpline providing timely and trusted resources to help individuals navigate sleep issues and sleep disorders at every step of the journey.

Key Points: 
  • "An estimated 50-70 million Americans live with a chronic sleep disorder, yet the majority are undiagnosed," said Julie Flygare , JD, President & CEO of Project Sleep.
  • "We know that the path to finding accurate sleep disorder diagnosis, treatment, and support is often long, lonely, and inefficient.
  • This is why the new Sleep Helpline will meet people where they are in moments of uncertainty, to provide free and personalized one-to-one support and resources."
  • Special thanks to Jazz Pharmaceuticals and Harmony Biosciences for generously providing sponsorship funding to support the development of Project Sleep's new Sleep Helpline to support millions of people facing sleep issues and sleep disorders.

HARMONY BIOSCIENCES SHOWCASES THE NEWEST PATIENTS AT THE HEART AND PROGRESS AT THE HEART AWARD RECIPIENTS

Retrieved on: 
Thursday, October 26, 2023

"With support from a previous Patients at the Heart award, we achieved the 'Strategic Communications for Awareness' project, which fortified and expanded our patient registry and outreach endeavors.

Key Points: 
  • "With support from a previous Patients at the Heart award, we achieved the 'Strategic Communications for Awareness' project, which fortified and expanded our patient registry and outreach endeavors.
  • Progress at the Heart provides funding support for novel initiatives addressing disparities, injustices, and inequities in rare neurological disease and sleep disorder communities.
  • The next call for Patients at the Heart and Progress at the Heart award nominations will be announced next year.
  • To learn more about Patients at the Heart, please visit: https://www.harmonybiosciences.com/funding-programs/patients-at-the-heart/ .

Zevra Therapeutics Presents Design of Phase 2 Clinical Trial Investigating KP1077 for the Treatment of Idiopathic Hypersomnia (IH) at Beyond Sleepy 2023

Retrieved on: 
Saturday, June 3, 2023

CELEBRATION, Fla., June 03, 2023 (GLOBE NEWSWIRE) -- Zevra Therapeutics, Inc. (NasdaqGS: ZVRA) (Zevra, or the Company, formerly Zevra.), a rare disease therapeutics company, today announced that an oral presentation featuring the Phase 2 clinical trial design evaluating KP1077 as a treatment for idiopathic hypersomnia (IH), a rare neurological sleep disorder, will be presented at the Hypersomnia Foundation’s 2023 Beyond Sleepy Conference being held June 2 - 4, 2023, in Indianapolis, IN, for people living with IH, narcolepsy and Kleine-Levin syndrome and their supporters. Zevra is a corporate sponsor of the Hypersomnia Foundation and the Beyond Sleep program.

Key Points: 
  • CELEBRATION, Fla., June 03, 2023 (GLOBE NEWSWIRE) -- Zevra Therapeutics, Inc. (NasdaqGS: ZVRA) (Zevra, or the Company, formerly Zevra.
  • Zevra is a corporate sponsor of the Hypersomnia Foundation and the Beyond Sleep program.
  • SDX was recently granted Orphan Drug Designation by the U.S. Food and Drug Administration (FDA) for the treatment of IH.
  • Zevra has also opened an IND to study KP1077 for the treatment of narcolepsy.

Sleep Consortium Launches Sleep Patient Data Collection Initiative to Accelerate Therapeutic Development

Retrieved on: 
Tuesday, May 23, 2023

"The Sleep Consortium takes a bold new approach to sleep research putting the patient in the center of its efforts. This initiative demands that the patient be the driver of new research considerations, have ownership of their own data, and serve as an invaluable partner to researchers internationally. This novel approach will leverage advanced technologies to further our understanding of sleep-wake disorders by starting with the debilitating symptom of excessive daytime sleepiness and identifying all the faces of patients who are suffering from it to better define the roads that lead to the development, consequence, and association with excessive daytime sleepiness." --- Anne Marie Morse, Director of Child Neurology and Pediatric Sleep Medicine, Geisinger, Janet Weis Children's Hospital and Sleep Consortium Scientific Advisor.

Key Points: 
  • Sleep Consortium and RARE-X, the Global Genes research program and patient-owned data collection platform, to collaborate on the Sleep Data Collection Initiative to accelerate the development of effective treatments for central disorders of hypersomnolence (CDoH) and related conditions.
  • ALISO VIEJO, Calif., May 23, 2023 /PRNewswire-PRWeb/ -- Sleep Consortium (SC) and RARE-X, the Global Genes research program and patient-owned data collection platform, today announced a collaboration to launch the Sleep Data Collection Initiative aimed at accelerating the development of effective treatments for central disorders of hypersomnolence (CDoH) and related conditions.
  • Phase 1 of the Sleep Data Collection Initiative has four main objectives: bring together a multi-disciplinary workgroup to prioritize sleep domains, develop an expanded sleep-focused data model, create a sleep patient community data collection portal, and the publication of a white paper detailing Phase 1 outcomes.
  • "We are thrilled to be partnering with the Sleep Consortium on this patient-centered initiative that promises to accelerate therapeutic development for central disorders of hypersomnolence.

HARMONY BIOSCIENCES ANNOUNCES 2022 FUNDING RECIPIENTS OF PATIENTS AT THE HEART AND PROGRESS AT THE HEART AWARD PROGRAMS

Retrieved on: 
Thursday, September 22, 2022

PLYMOUTH MEETING, Pa., Sept. 22, 2022 /PRNewswire/ -- Harmony Biosciences Holdings, Inc. ("Harmony") (NASDAQ: HRMY), a pharmaceutical company dedicated todeveloping and commercializing innovative therapies for patients with rare neurological diseases, today announced on the fourth annual World Narcolepsy Day, the funding recipients of its Patients at the Heart and Progress at the Heart award programs.

Key Points: 
  • PLYMOUTH MEETING, Pa., Sept. 22, 2022 /PRNewswire/ -- Harmony Biosciences Holdings, Inc. ("Harmony") (NASDAQ: HRMY), a pharmaceutical company dedicated todeveloping and commercializing innovative therapies for patients with rare neurological diseases, today announced on the fourth annual World Narcolepsy Day, the funding recipients of its Patients at the Heart and Progress at the Heart award programs.
  • This award funds innovative programs that address health disparities and inequities in rare neurological disease and sleep disorder communities.
  • Combined with the Patients at the Heart awards, total funding for these two programs has now increased to $380,000 in over the last four years.
  • "In recognition of World Narcolepsy Day, we are pleased to announce this year's recipients of the Patients at the Heart and Progress at the Heart award programs.

Kleine-Levin Syndrome Foundation Urges Lawmakers to Bring National Awareness to KLS research

Retrieved on: 
Monday, February 28, 2022

WASHINGTON, Feb. 28, 2022 /PRNewswire/ -- The Kleine-Levin Syndrome Foundation today honorsRare Disease Day by calling for the inclusion of Kleine-Levin Syndrome (KLS) in the National Institutes of Health (NIH) biennial "Sleep Research Plan."

Key Points: 
  • WASHINGTON, Feb. 28, 2022 /PRNewswire/ -- The Kleine-Levin Syndrome Foundation today honorsRare Disease Day by calling for the inclusion of Kleine-Levin Syndrome (KLS) in the National Institutes of Health (NIH) biennial "Sleep Research Plan."
  • To date, research about KLS has been limited because KLS affects a very small population and is in most cases self-limiting.
  • This week, the Kleine-Levin Syndrome Foundation is participating in Rare Disease Week on Capitol Hill to build awareness about KLS amongst federal lawmakers.
  • A Times Square billboard will today feature a plea from the Kleine-Levin Syndrome Foundation for more KLS research.

KLS Foundation Launches First-Ever Kleine Levin Syndrome Patient Registry

Retrieved on: 
Monday, January 25, 2021

SAN JOSE, Calif., Jan. 25, 2021 /PRNewswire-PRWeb/ --The Kleine-Levin Syndrome (KLS) Foundation today launched a first-of-its-kind patient registry.

Key Points: 
  • SAN JOSE, Calif., Jan. 25, 2021 /PRNewswire-PRWeb/ --The Kleine-Levin Syndrome (KLS) Foundation today launched a first-of-its-kind patient registry.
  • "This is a monumental step in the Foundation's ability to enhance existing knowledge about KLS, support the patient community, and drive forward medical research to better understand and treat KLS," said president of the KLS Foundation Steve Maier.
  • The KLS Foundation partnered with digital health company Beneufit, Inc. to create a patient registry to accelerate our collective understanding and treatment of KLS.
  • After a full year of exploratory work, the KLS Foundation and Beneufit built a heavily customized registry.

Kannalife, Inc. Announces Completion of NIH-NIDA Phase 1 Grant and Results from Lewis Katz School of Medicine at Temple University for the Potential Use of KLS-13019 in the Treatment of CIPN

Retrieved on: 
Tuesday, February 11, 2020

The study was performed by Kannalife and the Lewis Katz School of Medicine at Temple University (LKSOM) to assess KLS-13019, the Companys patented cannabidiol (CBD)-like molecule as a potential treatment of neuropathic pain and drug dependence.

Key Points: 
  • The study was performed by Kannalife and the Lewis Katz School of Medicine at Temple University (LKSOM) to assess KLS-13019, the Companys patented cannabidiol (CBD)-like molecule as a potential treatment of neuropathic pain and drug dependence.
  • The animal model portion of the study was conducted by Sara Jane Ward, PhD, Assistant Professor of Pharmacology at LKSOM.
  • We will continue to explore the possibility that KLS-13019 could be even safer and more effective than CBD, stated Dr. Ward.
  • TUHS is affiliated with the Lewis Katz School of Medicine at Temple University.

Kite and the CIBMTR® Present Positive Findings From Real-World Use of Yescarta® (Axicabtagene Ciloleucel) in Relapsed or Refractory Large B-Cell Lymphoma

Retrieved on: 
Monday, December 9, 2019

ORR was similar among older and younger patients (92 percent in patients 65 years versus 80 percent in patients

Key Points: 
  • ORR was similar among older and younger patients (92 percent in patients 65 years versus 80 percent in patients
  • With more than 85 centers authorized to treat patients with Yescarta, these post-approval results reinforce its potentially transformative role in third line or later relapsed or refractory large B-cell lymphoma, said Christi Shaw, Chief Executive Officer of Kite.
  • Neurologic toxicities, including fatal or life-threatening reactions, occurred in patients receiving Yescarta, including concurrently with CRS or after CRS resolution.
  • Yescarta is available only through a restricted program under a Risk Evaluation and Mitigation Strategy (REMS) called the Yescarta REMS.