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July 18, 2019July 18, 2019

European Initiative Targets Diagnosis, Treatment of Rare Diseases

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A new international consortium based in Paris, and funded largely by the 28-member European Union, intends to speed the diagnosis of rare diseases, while also accelerating the development of ... Read more

July 16, 2019July 16, 2019

No Growth Hormone Deficiency Seen in PWS Adults Who Had Treatment as Kids

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A new study suggests that people with Prader-Willi syndrome (PWS) who are treated with growth hormone as children do not have growth hormone deficiency as young adults. The study, ... Read more

July 11, 2019July 11, 2019

Growth Hormone Safe, Beneficial for PWS Patients Under 2, Study Reports

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Growth hormone treatment in children younger than 2 with Prader-Willi syndrome (PWS) is safe, reduces body fat, and is linked with earlier ability to walk, a new study reports. ... Read more

July 9, 2019July 9, 2019

Gut Problems More Common in Overweight, Obese PWS Patients, Study Finds

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Overweight or obese Prader-Willi syndrome (PWS) patients are more likely to have gut problems and take medicines for gastrointestinal illnesses, a study has found. The study also showed that ... Read more

July 5, 2019July 4, 2019

World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients

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It wasn’t until Gordana Loleska’s son David was 14 years old that doctors in their native North Macedonia diagnosed his kidney, vision, and hearing problems as Alport syndrome. Although ... Read more

July 2, 2019July 2, 2019

Investigational Therapy May Alleviate Sleep Disorder, Cognitive Decline in Children with PWS

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Pitolisant, an investigational anti-sleepiness therapy in the U.S., may help reduce daytime sleepiness and improve cognitive function in children with Prader-Willi syndrome (PWS), a case series suggests. The study, ... Read more

June 27, 2019June 27, 2019

Case Report Discusses Movement, Language Development in Infant with PWS

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Infants with Prader-Willi syndrome can show abnormalities in motor and verbal development within the first six months of life, a case report highlights. Better understanding and recognition of these ... Read more

June 26, 2019June 25, 2019

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

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A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials ... Read more

June 25, 2019June 25, 2019

Cycloid Psychosis Often Accompanies Prader-Willi Syndrome, Study Finds

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Many patients with Prader-Willi syndrome may manifest psychotic symptoms that meet the diagnostic criteria of cycloid psychosis, a study shows. However, this particular psychological condition is often disregarded by ... Read more

June 21, 2019June 21, 2019

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients

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Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, ... Read more

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