Updates

September 5, 2019September 5, 2019
Deficit in Social Cognitive Abilities Among PWS Children Linked to Genetic Subtype, Study Says

The deficit in social cognitive abilities among young children with Prader-Willi syndrome (PWS) starts at an early age — and varies with the genetic ... Read more
September 3, 2019September 3, 2019
Birth Weight and Length May Help Identify Newborns with Prader-Willi Syndrome

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 ... Read more
August 30, 2019August 30, 2019
‘Disorder’ Film Festival Offers Look at Siblings Touched by Rare Diseases

Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest. ... Read more
August 29, 2019August 29, 2019
Both Surgery, Cast Correction Effective in Treating Early-onset Scoliosis in PWS Children, Study Reports

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 ... Read more
August 28, 2019August 28, 2019
At NY Genome Center, Legal Expert Presents Ethical Dilemmas in Gene Editing

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 ... Read more

News

Saniona Sets Goals for its Clinical Program of Tesomet for PWS
August 27, 2019August 27, 2019
Saniona will continue to develop Tesomet (tesofensine/metoprolol) as a potential therapy for Prader-Willi syndrome (PWS), with ...
News

FPWR Research Symposium and Family Conference Set for Oct. 3-5 in New Orleans
August 22, 2019August 22, 2019
The upcoming Research Symposium and Family Conference, hosted by the Foundation for Prader-Willi Research (FPWR), will ...
News

Patients Treated With Growth Hormone Score Higher on Vocabulary IQ Tests, Study Shows
August 20, 2019August 20, 2019
People with Prader–Willi syndrome (PWS) who received growth hormone therapy had significantly higher vocabulary ...
News

Nebraska’s Neena Nizar Seeks Cure for Jansen’s, One of World’s Rarest Diseases
August 19, 2019August 19, 2019
Imagine living your whole life with a painful disease so rare that only 25 ...
News

Factors Such as Older Age, Obesity, and Heart Disease Raise Risk of Blood Clots in PWS Patients, U.S. Survey Says
August 13, 2019August 13, 2019
Certain risk factors — such as older age, obesity, metabolic syndrome, cardiovascular disease, and ...
News

Inhibiting Epigenetic Enzyme May Help Reactivate Key PWS Genes, Study Suggests
August 8, 2019August 8, 2019
Inhibiting an enzyme involved in Prader Willi syndrome (PWS) can help rescue the activity ...

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Millendo Therapeutics Announces Phase 2b/3 Trial Assessing Promising PWS Therapy, Livoletide
August 6, 2019August 6, 2019
A potential new treatment for Prader-Willi syndrome (PWS) will be tested in the large, ...
Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card
August 2, 2019August 2, 2019
Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of ...
Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate
August 1, 2019
DESTINY PWS Phase 3 Trial Halfway to Complete Enrollment
August 1, 2019August 1, 2019
Study Shows Variety of Testicular Function, Histology in PWS Patients
July 30, 2019July 30, 2019
Partners Launch Landmark Natural History Study of Prader-Willi Syndrome
July 25, 2019July 25, 2019

ADHD Medicine Guanfacine May Help Manage Behavioral Disturbances, Study Shows
July 23, 2019July 23, 2019
Treatment with once daily guanfacine extended-release tablets — used to treat attention deficit hyperactivity ...
European Initiative Targets Diagnosis, Treatment of Rare Diseases
July 18, 2019July 18, 2019
No Growth Hormone Deficiency Seen in PWS Adults Who Had Treatment as Kids
July 16, 2019July 16, 2019
Growth Hormone Safe, Beneficial for PWS Patients Under 2, Study Reports
July 11, 2019July 11, 2019

Gut Problems More Common in Overweight, Obese PWS Patients, Study Finds
July 9, 2019July 9, 2019
Overweight or obese Prader-Willi syndrome (PWS) patients are more likely to have gut problems ...
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
July 5, 2019July 4, 2019
Investigational Therapy May Alleviate Sleep Disorder, Cognitive Decline in Children with PWS
July 2, 2019July 2, 2019

News

Case Report Discusses Movement, Language Development in Infant with PWS
June 27, 2019June 27, 2019
Infants with Prader-Willi syndrome can show abnormalities in motor and verbal development within the ...
News

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala
June 26, 2019June 25, 2019
A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy ...
News

Cycloid Psychosis Often Accompanies Prader-Willi Syndrome, Study Finds
June 25, 2019June 25, 2019
Many patients with Prader-Willi syndrome may manifest psychotic symptoms that meet the diagnostic criteria ...
News

Eurordis Unveils Integrated-care Initiative for Rare Disease Patients
June 21, 2019June 21, 2019
Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to ...
News

Prenatal Clinical Signs Demand Genetic Tests for PWS, Researchers Say
June 20, 2019June 20, 2019
A new case report illustrates the importance of prenatal genetic tests when clinical signs ...
News

‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy
June 18, 2019June 18, 2019
People with rare diseases know that the right government policies can make a big ...
News

Exercise Improves Fitness in PWS Patients, Review Study Shows
June 13, 2019June 13, 2019
Long-term exercise improves physical performance in patients with Prader-Willi syndrome (PWS), but immediate physiological ...
News

New Guidelines for PWS Treatment Implemented at Tennessee Clinic
June 11, 2019June 11, 2019
A group of clinicians has established a series of guidelines for the treatment of ...
News

First-round Winners Announced for Foundation’s 2019 Prader-Willi Research Awards
June 6, 2019June 6, 2019
The Foundation for Prader-Willi Research (FPWR) recently announced the first-round winners of its 2019 ...

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

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