Updates

January 14, 2021January 14, 2021
Longer Use of Intranasal Oxytocin Helped Boys With PWS

Intranasal use of the hormone oxytocin for three months had positive effects on social and eating behavior in boys with Prader-Willi Syndrome (PWS), according to ... Read more
January 13, 2021January 13, 2021
NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual ... Read more
January 12, 2021January 12, 2021
INV-101 Granted FDA Rare Pediatric Disease Designation

Inversago Pharma‘s INV-101 has been granted rare pediatric disease (RPD) designation by the U.S. Food and Drug Administration for the treatment of Prader-Willi syndrome ... Read more
January 7, 2021January 7, 2021
Radius Planning Pivotal Trial of Cannabidiol RAD011

Radius Health has acquired the development and commercialization rights to a synthetic oral cannabidiol therapy known as RAD011, with plans to start a pivotal ... Read more
January 5, 2021January 5, 2021
Remote Play Program May Improve Cognition, Behavior in PWS Children

A remote play-based intervention program improved pretend play skills, cognition, and behavior in children with Prader-Willi syndrome (PWS), a small study shows. The preliminary findings support ... 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

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

INV-101 Granted FDA Rare Pediatric Disease Designation

Radius Planning Pivotal Trial of Cannabidiol RAD011

Remote Play Program May Improve Cognition, Behavior in PWS Children

EURORDIS Award Contest Welcomes Photos of Life With Rare Disease

Early, Sustained Growth Hormone Treatment Linked to Greater Benefits in Real-world Study

Mediterranean Diet, Exercise Reduce Weight, Cholesterol Levels in PWS Patients, Study Shows

NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

Genetic Subtypes Determine Frequency of Psychiatric Behaviors in PWS, Study Finds

PWSA USA Hosting Dec. 13 Virtual ‘Hope for the Holidays’ Benefit Concert

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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

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

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

Longer Use of Intranasal Oxytocin Helped Boys With PWS

NORD Seeks Speakers for 2021 Virtual ‘Living Rare, Living Stronger’ Forum

INV-101 Granted FDA Rare Pediatric Disease Designation

Radius Planning Pivotal Trial of Cannabidiol RAD011

Remote Play Program May Improve Cognition, Behavior in PWS Children

EURORDIS Award Contest Welcomes Photos of Life With Rare Disease

Early, Sustained Growth Hormone Treatment Linked to Greater Benefits in Real-world Study

Mediterranean Diet, Exercise Reduce Weight, Cholesterol Levels in PWS Patients, Study Shows

NORD Push for Rare Disease Advisory Councils Focus of Dec. 16 Public Meeting

Genetic Subtypes Determine Frequency of Psychiatric Behaviors in PWS, Study Finds

PWSA USA Hosting Dec. 13 Virtual ‘Hope for the Holidays’ Benefit Concert

Subscribe to our mailing list

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

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