standards of care

Investigators conducting an online survey to gather information from people with inclusion-body myositis report early results and ask a few more questions

posted on November 27, 2013 - 5:00am
Investigators conducting an online survey launched in January 2013 to gather anonymous information from people with inclusion-body myositis (IBM) are now reporting preliminary results and are asking the original respondents to complete a short supplementary survey.

As the search continues for SMA treatments and a cure, MDA is working to help those living with the disease today

posted on August 29, 2013 - 10:37am
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