Updates

October 22, 2020October 22, 2020
Probiotic BPL1 Eases Abdominal Fat, Aids Mental Health of PWS Children, Study Finds

In older children with Prader-Willi syndrome (PWS), the probiotic supplement BPL1 reduced abdominal fat, social withdrawal and depression, while also easing insulin resistance, a study ... Read more
October 20, 2020October 20, 2020
Telehealth ‘Helpful’ Alternative to In-person Care, Rare Disease Patients Say

A majority of rare disease patients using telehealth during the COVID-19 pandemic thought the experience positive, and many would like the option of continuing its ... Read more
October 15, 2020October 15, 2020
Sleep Apnea Common Among Infants, Children With PWS, Chinese Study Finds

Sleep apnea — a potentially serious disorder in which breathing repeatedly stops and starts during sleep — affects more than 80% of children with ... Read more
October 13, 2020October 13, 2020
FDA Provides Feedback to Saniona on Development of Tesomet for PWS

The U.S. Food and Drug Administration (FDA) has provided some recommendations to Saniona regarding the development of Tesomet to treat Prader-Willi syndrome (PWS). In particular, ... Read more
October 8, 2020October 8, 2020
Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar ... 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

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

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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

IPWSO Announces Early Results of COVID-19 Survey, Seeks More Participants

Rare Disease Communities Invited to Submit Works to 2020 Rare Artist Contest

Study Links Structural Changes in Brain to Behavioral Problems in PWS Patients

Non-invasive Method Could Help Detect Low-grade Inflammation, Study Suggests

PWS Patients With Chromosome 15 Deletions More Prone to Obesity, Study Contends

High Protein Meals Boost GLP-1 Hormone Known to Suppress Appetite in PWS Children, Study Finds

Gene’s Loss Linked to Sleep and Food Irregularities in PWS Mouse Model

Dietary Planning Helps Maintain Normal Fat Tissue Levels in PWS Children

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

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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

Subscribe to our mailing list

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

IPWSO Announces Early Results of COVID-19 Survey, Seeks More Participants

Rare Disease Communities Invited to Submit Works to 2020 Rare Artist Contest

Study Links Structural Changes in Brain to Behavioral Problems in PWS Patients

Non-invasive Method Could Help Detect Low-grade Inflammation, Study Suggests

PWS Patients With Chromosome 15 Deletions More Prone to Obesity, Study Contends

High Protein Meals Boost GLP-1 Hormone Known to Suppress Appetite in PWS Children, Study Finds

National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

Gene’s Loss Linked to Sleep and Food Irregularities in PWS Mouse Model

Dietary Planning Helps Maintain Normal Fat Tissue Levels in PWS Children

Pin It on Pinterest