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Leading NIH expert on GNE myopathy joins the Neuromuscular Disease Foundation (NDF)

The Neuromuscular Disease Foundation was founded in 2006 by Gila Michael. The charity with a mission to enhance the quality of the lives of people living with GNE Myopathy (also known as HIBM) through advocacy, education, outreach and funding critical research focused on treatments and a cure have come a long way since they started their journey with many a milestone and achievements in clinical research and advocacy behind them and we are thrilled to share this exciting news as the Neuromuscular Disease Foundation (NDF) CEO Lalé Welsh announces that Dr. Nuria Carrillo has formally joined the NDF staff as its Chief Medical Officer. 

After a decade as a physician-scientist at the National Institutes of Health (NIH), she is joining the world’s leading advocacy group funding the search for treatments for GNE Myopathy (GNEM). Dr. Carrillo, who is board-certified in pediatrics and genetics, led the program at NIH to understand the progression of GNEM, as well as to advance promising therapies into clinical trials through multidisciplinary collaborations. Ms. Welsh stated that “the funding for this position was made possible, in part, by the generosity of a donor who has graciously created a ‘challenge match fund’ to help defray the cost of her salary for the next two years”. 

​Dr. Carrillo said she is looking forward to becoming part of the non-profit foundation that is driven by passion for improving the lives of patients with this rare disease. “Once I was confident the clinical trial for a potential treatment which I helped oversee at NIH would continue as planned, I felt comfortable moving on to another stage in my life.” In her new role, Dr. Carrillo will continue to help patients with GNE myopathy from a different, but crucially important platform. 


About GNE Myopathy (also known as HIBM): GNEM is an adult-onset, rare, genetic, distal muscle disease affecting people of all backgrounds to find out more information click the learn more button below.
The Neuromuscular Disease Foundation  is a public charity and the world’s leading foundation funding research for a cure for GNEM and is actively seeking biotech partners. Use the buttons below to learn more about NDF’s scientific progress and development objectives or to contact Pete Jackson.

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