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March 3, 2020March 3, 2020

Elsevier Opens Books, Review Articles to Rare Disease Researchers Starting Feb. 29

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Beginning on Feb. 29, Rare Disease Day, chapters from notable scientific books and clinical review articles covering rare disorders will be available free-of-charge from Elsevier. The offer runs through April 30, ... Read more

February 27, 2020February 27, 2020

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

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Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those looking to begin the complex process in its Feb. ... Read more

February 21, 2020March 3, 2020

Patients, Supporters Worldwide Recognizing Rare Disease Day 2020

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An abundance of events are afoot around the world to mark Rare Disease Day 2020 on Feb. 29. The activities are focused on heightening awareness about rare diseases and ... Read more

February 20, 2020February 20, 2020

Dental Care Crucial to Children with PWS Due to Inadequate and Acidic Saliva, Study Says

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Children with Prader-Willi syndrome (PWS) secrete less saliva and more acidic saliva than do their healthy peers. These changes put them at a higher risk of tooth decay (caries) ... Read more

February 18, 2020February 18, 2020

Psychiatric Symptoms More Common in PWS than in Other Genetic Diseases, Study Finds

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Children and young adults with Prader-Willi syndrome (PWS) have a higher prevalence of psychiatric symptoms than their peers with other genetic disorders associated with intellectual disability (ID), a study ... Read more

February 13, 2020February 13, 2020

Tiny DNA Deletion Including SNORD116 Gene Causes PWS-Like Disease, Case Study Shows

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Loss of a region on chromosome 15 that involves the SNORD116 gene leads to the development of Prader-Willi syndrome (PWS)-like disease, suggesting that missing the gene is enough to ... Read more

February 11, 2020February 11, 2020

Individuals With PWS Harbor Lower Levels of Irisin Hormone Than Other Obese People, Study Finds

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Levels of the hormone irisin are elevated in obese people, but not in those with Prader-Willi syndrome (PWS), likely reflecting underlying differences in fat and muscle composition, a new ... Read more

February 10, 2020February 10, 2020

FDA Efforts to Bring Patients into Treatment Decisions Focus of NORD Webinar

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The U.S. Food and Drug Administration (FDA), a vast government bureaucracy, employs about 17,500 people and had a budget of $5.7 billion in 2019. Yet even with its enormous ... Read more

February 7, 2020February 7, 2020

With Post-Brexit Move to Amsterdam Complete, EMA Renews Rare Disease Focus

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The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business last month — just over ... Read more

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