US FDA Grants Expanded Approval of ELEVIDYS Gene Therapy for DMD Patients Ages 4 and Above

About Us

Our mission is to empower people living with neuromuscular diseases to live longer, more independent lives.

The LGMD Community Celebrates Adoption of ICD-10 Diagnostic Codes for LGMD

The implementation of these ICD-10 codes represents a culmination of two-years of collaborative efforts within the LGMD patient, clinical, and research communities.

New York, NY. – June 29, 2022. The Muscular Dystrophy Association, Coalition to Cure Calpain 3, CureLGMD2i, Jain Foundation, Kurt+Peter Foundation, LGMD Awareness Foundation, LGMD1D DNAJB6 Foundation, LGMD2i Research Fund, and Speak Foundation, who collectively serve the limb-girdle muscular dystrophy (LGMD) community, are pleased to announce and celebrate the acceptance of ICD-10-CM codes for LGMD and several of its subtypes. These diagnostic codes will be fully implemented and ready for use starting this October.

The LGMD Community Celebrates Adoption of ICD-10 Diagnostic Codes for LGMD

This significant advance could well shorten the diagnostic odyssey for individuals with LGMD, facilitate the targeted care the community needs, and accelerate surveillance and epidemiological research. In addition, this will allow individuals with LGMD to receive more precise care from specialists and participate in the variety of services and programs provided by our advocacy organizations. They should also help facilitate reimbursement by public and private insurers.

"The ICD-10-CM is a system used by physicians and other healthcare providers to classify and code all diagnoses, symptoms and procedures recorded in conjunction with hospital care in the United States. The LGMDs are under-researched diseases with only limited efforts to truly capture their true prevalence and incidence. This adoption of ICD-10-CM codes for the most prevalent LGMDs should substantially accelerate the understanding of LGMD, thus also advancing efforts to better treat these diseases," says Paul Melmeyer, Vice President, Public Policy & Advocacy for MDA.

This milestone is the culmination of over two years of collaborative efforts between LGMD advocacy organizations and leading LGMD clinicians and researchers.

"The ability to accurately capture the limb-girdle muscular dystrophy diagnosis through specific ICD-10-CM codes is an important step forward for these conditions. These codes will support better prevalence studies and patient ascertainment for approaching therapeutic studies. Such efforts will ultimately lead to better care for our patients," says Nicholas Johnson , MD, MSCI, FAAN, Vice Chair of Research in the Department of Neurology at the Virginia Commonwealth University School of Medicine.

Our organizations will continue to seek ICD-10-CM codes for the LGMD subtypes yet to receive their own subtype-specific code, and we will coordinate efforts to educate the medical community on the presence of these new ICD-10-CM codes and will collaborate with all relevant stakeholders to ensure their full usage in the clinical and research communities.

Logos of companies that support the LGMD Community