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September 5, 2019September 5, 2019

Deficit in Social Cognitive Abilities Among PWS Children Linked to Genetic Subtype, Study Says

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The deficit in social cognitive abilities among young children with Prader-Willi syndrome (PWS) starts at an early age — and varies with the genetic subtype, a study found. Children ... Read more

September 3, 2019September 3, 2019

Birth Weight and Length May Help Identify Newborns with Prader-Willi Syndrome

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Newborns with Prader-Willi syndrome often have a lower birth weight and can be shorter than newborns who do not have this rare disease, a study conducted in Italy reports. ... Read more

August 30, 2019August 30, 2019

‘Disorder’ Film Festival Offers Look at Siblings Touched by Rare Diseases

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Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest. Two entries in November’s “Disorder: ... Read more

August 29, 2019August 29, 2019

Both Surgery, Cast Correction Effective in Treating Early-onset Scoliosis in PWS Children, Study Reports

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Both growth friendly surgery (GFS) and serial cast correction (SCC) were found to help resolve early-onset scoliosis, and to improve spine structure, in children with Prader-Willi syndrome (PWS), according ... Read more

August 28, 2019August 28, 2019

At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

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Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially explosive ethical landmines surrounding such ... Read more

August 27, 2019August 27, 2019

Saniona Sets Goals for its Clinical Program of Tesomet for PWS

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Saniona will continue to develop Tesomet (tesofensine/metoprolol) as a potential therapy for Prader-Willi syndrome (PWS), with results from a Phase 2a clinical study expected to be reported soon. The company has ... Read more

August 22, 2019August 22, 2019

FPWR Research Symposium and Family Conference Set for Oct. 3-5 in New Orleans

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The upcoming Research Symposium and Family Conference, hosted by the Foundation for Prader-Willi Research (FPWR), will offer the latest in research studies and promising treatments, and the opportunity to connect with ... Read more

August 20, 2019August 20, 2019

Patients Treated With Growth Hormone Score Higher on Vocabulary IQ Tests, Study Shows

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People with Prader–Willi syndrome (PWS) who received growth hormone therapy had significantly higher vocabulary IQ scores compared with those who did not have the treatment, a study shows. The ... Read more

August 19, 2019August 19, 2019

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases

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Imagine living your whole life with a painful disease so rare that only 25 others worldwide have what you have. And that you’re one of just six such people ... Read more

August 13, 2019August 13, 2019

Factors Such as Older Age, Obesity, and Heart Disease Raise Risk of Blood Clots in PWS Patients, U.S. Survey Says

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Certain risk factors — such as older age, obesity, metabolic syndrome, cardiovascular disease, and kidney failure — increase the likelihood of blood clots in patients with Prader-Willi syndrome (PWS), ... Read more

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