Updates

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

Certain risk factors — such as older age, obesity, metabolic syndrome, cardiovascular disease, and kidney failure — increase the likelihood of blood clots in ... Read more
August 8, 2019August 8, 2019
Inhibiting Epigenetic Enzyme May Help Reactivate Key PWS Genes, Study Suggests

Inhibiting an enzyme involved in Prader Willi syndrome (PWS) can help rescue the activity of specific genes in neurons, and halt disease, a lab ... Read more
August 6, 2019August 6, 2019
Millendo Therapeutics Announces Phase 2b/3 Trial Assessing Promising PWS Therapy, Livoletide

A potential new treatment for Prader-Willi syndrome (PWS) will be tested in the large, international clinical trial ZEPHYR, in a partnership between Millendo Therapeutics and ... Read more
August 2, 2019August 2, 2019
Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card

Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of ... Read more
August 1, 2019
Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate

Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in ... Read more

News

DESTINY PWS Phase 3 Trial Halfway to Complete Enrollment
August 1, 2019August 1, 2019
The ongoing DESTINY PWS Phase 3 trial is halfway to its target enrollment of ...
News

Study Shows Variety of Testicular Function, Histology in PWS Patients
July 30, 2019July 30, 2019
There is a wide range of long-term testicular function and cell-level appearance in males ...
News

Partners Launch Landmark Natural History Study of Prader-Willi Syndrome
July 25, 2019July 25, 2019
Two organizations that advocate for people with Prader-Willi syndrome have teamed up with Boston-based ...
News

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 ...
News

European Initiative Targets Diagnosis, Treatment of Rare Diseases
July 18, 2019July 18, 2019
A new international consortium based in Paris, and funded largely by the 28-member European ...
News

No Growth Hormone Deficiency Seen in PWS Adults Who Had Treatment as Kids
July 16, 2019July 16, 2019
A new study suggests that people with Prader-Willi syndrome (PWS) who are treated with ...

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Growth Hormone Safe, Beneficial for PWS Patients Under 2, Study Reports
July 11, 2019July 11, 2019
Growth hormone treatment in children younger than 2 with Prader-Willi syndrome (PWS) is safe, ...
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
Case Report Discusses Movement, Language Development in Infant with PWS
June 27, 2019June 27, 2019
NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala
June 26, 2019June 25, 2019

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 ...
Eurordis Unveils Integrated-care Initiative for Rare Disease Patients
June 21, 2019June 21, 2019
Prenatal Clinical Signs Demand Genetic Tests for PWS, Researchers Say
June 20, 2019June 20, 2019
‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy
June 18, 2019June 18, 2019

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 ...
New Guidelines for PWS Treatment Implemented at Tennessee Clinic
June 11, 2019June 11, 2019
First-round Winners Announced for Foundation’s 2019 Prader-Willi Research Awards
June 6, 2019June 6, 2019

News

Two Grants Will Advance Research for ‘Waking’ Healthy Genes in Prader-Willi Syndrome
June 4, 2019June 4, 2019
A research project aiming to uncover whether awakening “sleeping” genes could overcome the genetic ...
News

Saniona Creates Advisory Board to Advance Development of Tesomet for PWS
May 30, 2019May 30, 2019
Biotech company Saniona announced the formation of a scientific advisory board to supervise and ...
News

Millendo Presents Phase 2b/3 Trial Overview of Livoletide, Potential PWS Therapy, at European Congress
May 28, 2019May 28, 2019
Millendo Therapeutics presented an overview of its Phase 2b/3 clinical trial testing the long-term safety ...
News

Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries
May 27, 2019May 27, 2019
RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims ...
News

Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns
May 16, 2019May 16, 2019
With 250 rare diseases newly identified every year, scientists can barely keep up — ...
News

Nonprofit Group Works to Raise Rare Disease Awareness in India
April 25, 2019April 25, 2019
With an estimated 1.37 billion inhabitants, India will likely surpass China in five years ...
News

At-Home Dialysis Can Manage Kidney Disease in Prader-Willi Patients, Case Report Shows
April 23, 2019April 23, 2019
Peritoneal dialysis (PD), a blood filtration procedure that can be done at home, has ...
News

Study Outlines Rare Case of PWS Patient with Ear Canal and Bone Infection
April 18, 2019April 18, 2019
A new study described a rare case of a young man with Prader-Willi syndrome ...
News

Report Details Use of Denosumab to Treat Osteoporosis in PWS Patient
April 16, 2019April 16, 2019
A case report suggested that treatment with denosumab (commercial names: Prolia, Xgeva) could be effective for ...

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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