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June 18, 2019June 18, 2019

‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy

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People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most ... Read more

June 13, 2019June 13, 2019

Exercise Improves Fitness in PWS Patients, Review Study Shows

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Long-term exercise improves physical performance in patients with Prader-Willi syndrome (PWS), but immediate physiological response post-exercise appears unfavorable, a review of published studies shows. The study, “Physical exercise and Prader-Willi ... Read more

June 11, 2019June 11, 2019

New Guidelines for PWS Treatment Implemented at Tennessee Clinic

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A group of clinicians has established a series of guidelines for the treatment of people with Prader-Willi syndrome (PWS). The guidelines are already being implemented at Tennessee’s Prader-Willi Clinic ... Read more

June 6, 2019June 6, 2019

First-round Winners Announced for Foundation’s 2019 Prader-Willi Research Awards

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The Foundation for Prader-Willi Research (FPWR) recently announced the first-round winners of its 2019 research awards, which collectively totals a financial investment of $786,000 in grants. Theresa Strong, PhD, ... Read more

June 4, 2019June 4, 2019

Two Grants Will Advance Research for ‘Waking’ Healthy Genes in Prader-Willi Syndrome

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A research project aiming to uncover whether awakening “sleeping” genes could overcome the genetic errors underlying Prader-Willi syndrome (PWS) and lessen disease severity, has earned funding from the Prader-Willi ... Read more

May 30, 2019May 30, 2019

Saniona Creates Advisory Board to Advance Development of Tesomet for PWS

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Biotech company Saniona announced the formation of a scientific advisory board to supervise and guide the developmental program of Tesomet (tesofensine/metoprolol) for patients with Prader-Willi Syndrome (PWS). The company ... Read more

May 28, 2019May 28, 2019

Millendo Presents Phase 2b/3 Trial Overview of Livoletide, Potential PWS Therapy, at European Congress

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Millendo Therapeutics presented an overview of its Phase 2b/3 clinical trial testing the long-term safety and efficacy of livoletide — a potential first-in-class treatment to control hyperphagia (excessive hunger) and food-related ... Read more

May 27, 2019May 27, 2019

Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries

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RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site ... Read more

May 16, 2019May 16, 2019

Rare Diseases Constitute a ‘Public Health Issue,’ NCATS Director Warns

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With 250 rare diseases newly identified every year, scientists can barely keep up — even as the healthcare system fails millions of Americans whose rare diseases have already been ... Read more

April 25, 2019April 25, 2019

Nonprofit Group Works to Raise Rare Disease Awareness in India

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With an estimated 1.37 billion inhabitants, India will likely surpass China in five years as the world’s most populous country. That also means it will have more rare-disease patients ... Read more

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