European Initiative Targets Diagnosis, Treatment of Rare Diseases
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 ... Read more
Updates
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No Growth Hormone Deficiency Seen in PWS Adults Who Had Treatment as Kids
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 ... Read more -
Growth Hormone Safe, Beneficial for PWS Patients Under 2, Study Reports
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 ... Read more -
Gut Problems More Common in Overweight, Obese PWS Patients, Study Finds
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. ... Read more -
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
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 ... Read more
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Investigational Therapy May Alleviate Sleep Disorder, Cognitive Decline in Children with PWS
Pitolisant, an investigational anti-sleepiness therapy in the U.S., may help reduce daytime sleepiness and ... -
Case Report Discusses Movement, Language Development in Infant with PWS
Infants with Prader-Willi syndrome can show abnormalities in motor and verbal development within the ... -
NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala
A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy ... -
Cycloid Psychosis Often Accompanies Prader-Willi Syndrome, Study Finds
Many patients with Prader-Willi syndrome may manifest psychotic symptoms that meet the diagnostic criteria ... -
Eurordis Unveils Integrated-care Initiative for Rare Disease Patients
Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to ... -
Prenatal Clinical Signs Demand Genetic Tests for PWS, Researchers Say
A new case report illustrates the importance of prenatal genetic tests when clinical signs ...
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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