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February 21, 2019February 21, 2019

Vienna to Host RARE2019 Meeting on Rare Diseases

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About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city early next month for the 2nd International Congress on Advanced Treatments in Rare Diseases. The ... Read more

February 19, 2019February 19, 2019

3-month Training Program Improves Hand Function in PWS Patients, Study Reports

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A low-intensity training program improved hand function in adults with Prader-Willi syndrome (PWS), according to results of a pilot study in six patients. The research, “Hand strength and dexterity ... Read more

February 14, 2019February 14, 2019

Bariatric Surgery a Feasible Option for Adolescents with Prader-Willi, Case Report Suggests

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With careful multidisciplinary evaluation and psychosocial support, adolescents with Prader-Willi syndrome (PWS) with severe obesity can undergo bariatric surgery with successful results, a case report suggests. The study, “Laparoscopic sleeve ... Read more

February 11, 2019February 11, 2019

Patients, Family and Friends to Take Part in Variety of Rare Disease Day Events Worldwide

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Scores of events are afoot worldwide to mark Feb. 28, Rare Disease Day 2019. The activities aim to raise awareness about rare diseases and the millions of people — estimates run ... Read more

February 7, 2019February 7, 2019

Food-related Behavior in PWS May be Linked to Neurological Response

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Involuntary reflexes such as being startled are abnormal in Prader-Willi Syndrome (PWS) patients, and lower startle response to food images may explain their eating habits, researchers from the University of ... Read more

February 5, 2019February 5, 2019

Disgusting Food Scenes Evoke Abnormal Brain Responses in Patients with Prader-Willi Syndrome, Study Reports

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Disgusting food scenes failed to activate primitive limbic structures in the brains of people with Prader-Willi syndrome (PWS), but cortical responses — where conscious sensations are processed — were almost ... Read more

February 5, 2019February 5, 2019

Adults with Prader-Willi Syndrome Show Prematurely Aged Brains, Study Shows

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Adults with Prader-Willi syndrome (PWS) show prematurely aged brains, being on average 8.74 years older than their chronological age, according to a neuroimaging study. This was not associated with body ... Read more

February 4, 2019February 6, 2019

ICD-10 Codes, ‘Really Important’ to Rare Disease Patients, Soon Up for Fresh Consideration

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G71.01 is, literally, the code for Duchenne muscular dystrophy. Q93.51 stands for Angelman syndrome, and G40.419 covers generalized and treatment-resistant epilepsies, which groups like Orphanet and the American Epilepsy Society define as including Dravet syndrome. ... Read more

January 29, 2019January 29, 2019

Nonprofit ausEE Promoting Feeding Tube Awareness Week in Australia

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Feeding Tube Awareness Week (FTAW) — taking place Feb. 3-9 — is held worldwide to provide information about tube feeding and access to support groups and resources to patients ... Read more

January 24, 2019January 24, 2019

Wearable Sensors Show Motor Differences Between Kids with PWS, Down Syndrome

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Wearable sensors to detect movement showed differences in motor abilities in children with Prader-Willi syndrome (PWS) and Down syndrome, compared with healthy children. Researchers say these sensors could be ... Read more

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