Updates

November 26, 2020November 26, 2020
Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their ... Read more
November 24, 2020November 24, 2020
Gene Silencing Mechanism Linked to PWS Focus of Early Study

The maternal SMCHD1 protein ensures genomic imprinting and the effective silencing of particular genes by protecting them from “gene-activating” proteins in the fertilized egg cell ... Read more
November 19, 2020November 19, 2020
US Trial Testing Harmony’s Pitolisant for Excessive Sleep Starts Recruiting Patients

A Phase 2 clinical trial testing pitolisant as a treatment for excessive daytime sleepiness (EDS) in Prader-Willi syndrome (PWS) has started recruiting patients at ... Read more
November 17, 2020November 17, 2020
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and ... Read more
November 12, 2020November 12, 2020
Parents of Teenagers With PWS Show High Levels of Stress, Study Finds

Stress levels of parents of children with Prader-Willi syndrome (PWS) increase as the children age, and are especially high during their teenage years, according ... Read more

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October 25, 2018October 26, 2018

Lean Muscle Mass Factors Strongly in Bone Health, Study Using Prader Willi Patients as Model Finds

News

Lean muscle mass is a strong predictor of bone mineral density, or bone health, research that used Prader-Willi syndrome (PWS) as a genetic model to determine which factors influence such density reports. In fact, lean mass was found to ... Read more

Updates

Survey Finds COVID-19 Disrupted Care, Well-Being of Rare Disease Patients in Europe

Gene Silencing Mechanism Linked to PWS Focus of Early Study

US Trial Testing Harmony’s Pitolisant for Excessive Sleep Starts Recruiting Patients

Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry

Parents of Teenagers With PWS Show High Levels of Stress, Study Finds

NORD Hosting ‘RareLaunch’ Workshops to Help Start Rare Disease Non-profits

24-hour Family Support Services Offered to PWS Community in US

Study Shows Benefits of Early Growth Hormone Therapy in PWS Children

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

Probiotic BPL1 Eases Abdominal Fat, Aids Mental Health of PWS Children, Study Finds

Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

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Sleep Apnea Common Among Infants, Children With PWS, Chinese Study Finds

FDA Provides Feedback to Saniona on Development of Tesomet for PWS

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

DCCR Leads to Continuous Reductions in Hyperphagia, Other Symptoms

Survey Seeks Input About Pandemic’s Effect on Mental Health of PWS Youth

Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US

Uric Acid Lower in Adults With PWS and Obesity, Study Shows

Text Message Queries Can Help in Tracking Weight Gain, Study Reports

Low Thyroid Hormone Thyroxine Levels in PWS Children Increase With Age

Lallemand, PWSA Become Running Partners to Support Fundraiser

Inversago Raises $35M to Develop Therapies for PWS, Other Disorders

Researchers Detail PWS Prenatal Diagnosis Based on Noninvasive Test

At-home Exercise May Improve Bone Health in PWS Children, Trial Shows

Gut Microbiome Differences in PWS Children Possibly Linked With Their Overeating, Study Suggests

Same But Different Photo Contest Celebrates People With Rare Diseases

FPWR Video Competition Seeks to Raise Awareness, Research Funds for PWS

Single, Wearable Motion Sensor Detects Trunk Instability, Poor Walking Symmetry in Study

Xperiome Platform Aims to Streamline Searches for Rare Diseases, Gain Patient Input

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

Online Survey Seeks to Assess Potential of Telemedicine for PWS

Lowest Dose of LV-101 Fares Well in Phase 3 Trial of PWS Children

New Streaming Channel Showcases Rare Disease Films

Lean Muscle Mass Factors Strongly in Bone Health, Study Using Prader Willi Patients as Model Finds