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July 10, 2020July 10, 2020

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

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The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease ... Read more

July 9, 2020July 9, 2020

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

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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 model of the disease, a ... Read more

July 7, 2020July 7, 2020

Dietary Planning Helps Maintain Normal Fat Tissue Levels in PWS Children

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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 abdominal organs, a study reported. The ... Read more

July 2, 2020July 2, 2020

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

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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 composition among young adults with ... Read more

June 25, 2020June 25, 2020

Study Links Inflammatory Molecules to Behavior Problems in PWS Children

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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 the condition, a recent study ... Read more

June 23, 2020June 23, 2020

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

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Growth hormone therapy improves height and body composition while lowering body mass index (BMI) in people with Prader-Willi syndrome (PWS), according to a review of clinical trials. The study, “Growth hormone ... Read more

June 22, 2020June 22, 2020

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

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The Alexion Charitable Foundation has awarded $1.1 million in grants to programs that support those with rare diseases during the COVID-19 pandemic, the organization recently announced. The grants will ... Read more

June 16, 2020June 16, 2020

Saniona Planning Phase 2b Trial of Tesomet in Controlling Hunger

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The U.S. Food and Drug Administration (FDA) gave positive feedback to Saniona regarding its work to advance Tesomet as a possible treatment to aid weight loss in people with ... Read more

June 11, 2020June 11, 2020

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

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Soleno Therapeutics’ investigational oral therapy diazoxide choline controlled-release (DCCR) failed to significantly lower excessive appetite, but it did improve body composition and behavior in Prader-Willi syndrome (PWS) patients, top-line ... Read more

June 9, 2020June 9, 2020

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

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Vitamin D levels are lower among adults with Prader-Willi syndrome (PWS) that in other obese individuals, mainly because PWS patients tend to consume less vitamin D through their diet, ... Read more

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