MitoAction Develops On-Line Resource for Mitochondrial Disease Care Providers

Share Article

Online Clinicians Guide to Mitochondrial Disease Now Available, sponsored by Edison Pharma

MitoAction.org announces today the completion of the Clinicians Symptom Guide to MITO Management, a comprehensive online resource designed to assist primary care providers in the care and symptom management of patients affected by mitochondrial disease. The Clinicians Symptom Guide to MITO Management fills a gap in healthcare libraries which to date have offered no practical overview for patient management. MitoAction fulfills their mission to support, educate and advocate for the mitochondrial disease patient community through development of the Clinicians Symptom Guide to MITO Management.

Mitochondrial disease is an energy metabolism disorder found in approximately one in 4,000 individuals in the U.S. The disease affects children as well as adults, and commonly manifests with neuromuscular symptoms such as stroke, muscle pain, extreme fatigue, and organ failure. There are no FDA approved drugs for mitochondrial disease. Symptoms vary widely from patient to patient; in many cases, the disease is inherited.

Written in collaboration with Margaret Klehm, CPNP and Mark Korson MD of the Floating Hospital for Children at Tufts Medical Center, the Clinicians Symptom Guide to MITO Management is the only resource of its kind. The Clinicians Symptom Guide to MITO Management is now freely available to the public online at http://www.mitoaction.org/. In light of the recent attention to the autism-mitochondrial disease connection, the need for this practical and comprehensive resource is apparent. This information needs to be accessed by the public and medical providers in order to improve quality of life and care for the person suffering from 'Mito,' says Cristy Balcells, Executive Director of MitoAction.

Dr. Korson is a leading clinician in the field of mitochondrial medicine, and has treated over 1,000 mitochondrial disease patients. This community of patients is terribly under-recognized and underserved. There are simply not enough clinicians aware of Mito, or who will play an active role in the care of these patients. As a result, it is too often the patient or the family member who becomes the de facto primary care provider.

MitoAction anticipates that the Clinicians Symptom Guide to MITO Management will improve baseline care and understanding of the complexities of mitochondrial disease, as well as educate pediatricians, primary care physicians, and home health nurses about managing the disease.

Edison Pharma (http://edisonpharma.com) is the dedicated sponsor for the project. We are honored to support the development of this important resource for clinicians and care-providers, stated Guy Miller, MD, PhD, CEO of Edison. This is a wonderful initiative that will go a long way to standardizing care for patients with mitochondrial disorders. MitoAction is grateful for Edisons support for this project to improve patient care for those affected by mitochondrial disease.

Further questions may be directed to Cristy Balcells, RN MSN Executive Director at 423-914-8322 or director @ mitoaction.org

SOURCE MitoAction

###

Share article on social media or email:

View article via:

Pdf Print

Contact Author

Cristy Balcells
Visit website