The Autonomic Rare Disorders Clinical Research Consortium (known also as the Autonomic Disorders Consortium, ADC) investigators and associated patient advocacy groups (PAGs) joined forces in 2008 to establish a broad-based initiative to find better ways to identify rare autonomic diseases, elucidate fundamental mechanisms of their pathogenesis, and discover therapeutic strategies to treatment.
The Genetic Disorders of Mucociliary Clearance Consortium (GDMCC) is comprised of 11 geographically-dispersed sites in North America and associated patient advocacy groups (PAGs). This Consortium studies a variety of rare airways diseases, including Primary Ciliary Dyskinesia (PCD), variant Cystic Fibrosis (CF), airway infection with non-tuberculous mycobacteria (NTM), rare immune disorders, and idiopathic bronchiectasis.
When my daughter was diagnosed with primary ciliary dyskinesia (PCD) in 1991, after seven long years of looking for answers for her chronic lung infections, my first question was 'who is doing research on this disorder?'...
Anyone who has been involved in rare diseases in the past quarter century will have had many opportunities to appreciate the enormous and unique impact of Dr. Stephen Groft's career in the field of rare diseases research. He has been a dominant figure and yet an easily approachable, collaborative and helpful champion of rare diseases research.
The Data Management and Coordinating Center (DMCC) and the Rare Diseases Clinical Research Network Consortia Principal Investigators (PIs) met in Rockville, MD for their spring meeting. Dr. Jeffrey Krischer and Consortia PIs saw this meeting as an opportunity to thank Dr. Steve Groft once more in person for his lifetime achievement in rare diseases.
The Rare Diseases Clinical Research Network is an initiative of the Office of Rare Diseases Research. National Center for Advancing Translational Sciences (NCATS) funded through a collaboration between NCATS and the National Institutes of Health.