Updates

July 10, 2020July 10, 2020
National Survey Seeks to Assess Full Social, Economic Burdens of Rare Diseases in US

The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, ... Read more
July 9, 2020July 9, 2020
Gene’s Loss Linked to Sleep and Food Irregularities in PWS Mouse Model

Loss of the paternal copy of Snord116, a gene associated with Prader-Willi syndrome (PWS), causes alterations in sleep and feeding responses in a mouse ... Read more
July 7, 2020July 7, 2020
Dietary Planning Helps Maintain Normal Fat Tissue Levels in PWS Children

Regular adherence to a careful dietary plan can help children with Prader-Willi syndrome (PWS) maintain a normal amount of visceral adipose tissue, the fatty tissue around ... Read more
July 2, 2020July 2, 2020
Growth Hormone Use Beyond Childhood Aids Young Adults With PWS, Study Finds

Growth hormone treatment given for years in childhood and then either restarted or continued as patients reach adult height shows sustained positive effects on body ... Read more
June 25, 2020June 25, 2020
Study Links Inflammatory Molecules to Behavior Problems in PWS Children

Children with Prader-Willi syndrome (PWS) have abnormally high blood levels of certain inflammatory molecules, which is significantly associated with behavioral traits and symptoms of ... 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

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

Dietary Planning Helps Maintain Normal Fat Tissue Levels in PWS Children

Growth Hormone Use Beyond Childhood Aids Young Adults With PWS, Study Finds

Study Links Inflammatory Molecules to Behavior Problems in PWS Children

Improved Height, Body Composition Found in PWS Patients Treated With Growth Hormone

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Saniona Planning Phase 2b Trial of Tesomet in Controlling Hunger

DCCR Fails to Reduce Excessive Appetite But Improves Other Measures, Data Show

Lack of Vitamin D in Diet Linked to Lower Levels in PWS Patients in Study

Coalition Will Address Racial Disparities in Rare Disease Communities

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Tracking Eye Movements Can Measure Chronic Desire to Overeat

Liraglutide Helped Maintain Rapid Weight Loss in Teenager With PWS

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Researchers Find Corticol Deficiency Rare in PWS, Advise Against Routine Hydrocortisone Use

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Patient and Caregiver Survey Aims at Healthier Lifestyle, Proper Diet

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

FPWR Awards More Than $900,000 to Nine Grants in PWS

PWS Supporters Encouraged to Share Stories, Raise Funds for Awareness Month in May

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

DCCR Approach Reduced Appetite in PWS Patients and Animal Obesity Studies

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

NORD’s Advice on COVID-19: You’re Stronger Than You Think

Millendo Stops Livoletide Development for PWS After ZEPHYR Trial Misses Goals

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

PWS-associated Gene Involved in Integration of Vision and Motor Control in the Brain

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

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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

Growth Hormone Use Beyond Childhood Aids Young Adults With PWS, Study Finds

Study Links Inflammatory Molecules to Behavior Problems in PWS Children

Improved Height, Body Composition Found in PWS Patients Treated With Growth Hormone

Alexion Charitable Foundation Giving $1.1M to Assist Rare Disease Community During Pandemic

Saniona Planning Phase 2b Trial of Tesomet in Controlling Hunger

DCCR Fails to Reduce Excessive Appetite But Improves Other Measures, Data Show

Lack of Vitamin D in Diet Linked to Lower Levels in PWS Patients in Study

Coalition Will Address Racial Disparities in Rare Disease Communities

Subscribe to our mailing list

Tracking Eye Movements Can Measure Chronic Desire to Overeat

Liraglutide Helped Maintain Rapid Weight Loss in Teenager With PWS

COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say

Researchers Find Corticol Deficiency Rare in PWS, Advise Against Routine Hydrocortisone Use

Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe

Video Games Connect Chronically Ill Children Isolated at Home, Hospital

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Patient and Caregiver Survey Aims at Healthier Lifestyle, Proper Diet

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

FPWR Awards More Than $900,000 to Nine Grants in PWS

PWS Supporters Encouraged to Share Stories, Raise Funds for Awareness Month in May

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

Industry leaders seek to advance innovative resources for rare and orphan disease communities amid COVID-19 outbreak

Surge in Telemedicine One ‘Good’ Outcome from COVID-19 Crisis, Doctors Say

DCCR Approach Reduced Appetite in PWS Patients and Animal Obesity Studies

NORD Opens COVID-19 Financial Aid Program for Rare Disease Community

PWS Children Struggle to Show Emotions, Study Suggests

NORD’s Advice on COVID-19: You’re Stronger Than You Think

Millendo Stops Livoletide Development for PWS After ZEPHYR Trial Misses Goals

Behavioral Problems in PWS Children Assessed Differently by Parents and Teachers, Study Finds

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

PWS-associated Gene Involved in Integration of Vision and Motor Control in the Brain

Pin It on Pinterest