The MCN represents a group of physicians at medical centers across the country that have expertise and experience in providing coordinated, multidisciplinary care for patients with genetic mitochondrial disease.
Mito Action’s mission is to improve the quality of life for children, adults, and families living with mitochondrial disease through support, education, outreach, advocacy, clinical research initiatives and by granting wishes for children affected by mitochondrial disease
www,mitoaction.org
The United Mitochondrial Disease Foundation (UMDF) promotes research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families. They have boundless resources and education on their site.
Dr Jirair Bedoyan and his team are currently conducting research into small molecule therapy for PDCD including C7 and novel small molecule treatments. The team is working to advance his research into early detection of PDCD, the first step in placing it on the Newborn Screening Test nationally.
A testament to the dedication and love they have for their daughter, Violet, Frances and Jon Pimentel created Hope for PDCD after her diagnosis. Hope for PDCD is dedicated to patient and family advocacy and supporting the first of its kind gene therapy research at UTSW.
The North American Mitochondrial Disease Consortium (NAMDC), consisting of several centers of excellence in the study and treatment of mitochondrial disease, maintains a Clinical Patient Registry. The NAMDC Registry collects information to help scientists learn more about mitochondrial diseases and their potential causes.
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