Facing a neuromuscular disease diagnosis can be devastating, overwhelming and confusing, but empowering yourself to take charge of your care or your child's care is more important than ever
Whether you are newly diagnosed or have been living with a neuromuscular disease for years, there is arguably one guiding principle that is most important when it comes to making decisions about your care and quality of life: You are in charge.
And with good reason.
This second of a series of three stories covering the 2014 MDA Clinical Conference discusses pain in neuromuscular disorders
The 2014 MDA Clinical Conference, held in Chicago March 16-19, was attended by some 500 people, mostly physicians and other health care professionals.
MDA's 2014 Clinical Conference on neuromuscular disease brings together health professionals from across the country and focuses on improving lives through excellence in care
"Optimizing Care: Improving Lives Through Clinical Excellence" is the theme of the 2014 MDA Clinical Conference, which takes place March 16-19 at the Hyatt Regency in Chicago. A secondary theme — "I am progress" — also will be in evidence, referencing the crucial role that MDA clinic team members nationwide have in providing expert medical care in neuromuscular disease and identifying new...
As the search continues for SMA treatments and a cure, MDA is working to help those living with the disease today
MDA is working to improve life span and quality of life for people with spinal muscular atrophy (SMA). Those efforts include the creation of the MDA clinical neuromuscular disease registry, promotion of newborn screening for SMA and publication of a family friendly version of SMA standard of care guidelines.
MDA clinical neuromuscular disease registry
A database of clinical information can be a powerful tool for improving both quality of life and research
Update (Feb. 5, 2013): Authors from the University of Rochester Medical Center, the Muscular Dystrophy Association (MDA), the Cystic Fibrosis (CF) Foundation and the American Academy of Neurology reviewed current approaches for obtaining patient data in Duchenne muscular dystrophy (DMD), and considered how monitoring and comparing outcomes measured across DMD clinics could lead to improved...
MDA’s ambassador artists help celebrate 20th anniversary
'Best practices' for treating various neuromuscular diseases are described in this third and final report on MDA's 2012 Clinical Conference
Several experts presented their views of "best practices" for care of people with neuromuscular disorders at MDA's 2012 Clinical Conference, held in Las Vegas March 4-7.
Many questions remain about optimal care in these disorders, but it's clear that attention to heart and respiratory function are of paramount importance.
This article looks at: