In 1998, the New England Consortium of Metabolic Programs was formed with support from the New England Regional Genetics Group (NERGG). Currently there are well over 100 members in the Consortium. In New England , most patients with metabolic disorders are followed by clinics or pediatric specialists that are associated with this Consortium. The Consortium brings together healthcare professionals at all levels involved in identifying and treating individuals with metabolic disorders including directors of each of the metabolic centers in New England, clinicians, public health professionals, social workers, nurses, psychologists, nutritionists, genetics counselors, laboratory directors and staff, representatives from parent organizations, and individuals with metabolic disorders. This is an informal organization that encourages innovation, collaboration, and flexibility in programming and activities. In some ways, it functions as a "think tank" for physicians, scientists, and other professionals interested in metabolism.

The goals of the Consortium are to disseminate information, collaborate in the development of social support programs and educational materials, support organizations for parents and adults with metabolic disorders, provide training for students in medicine and related fields, jointly develop and conduct research projects, and establish uniform treatment protocols for individuals with metabolic disorders.

The New England Consortium is centered at Children's Hospital Boston as the Coordinating Center . Susan Waisbren, PhD is the current director. The Consortium holds a monthly Planning Group Meeting at Children's Hospital Boston to discuss various topics relating to newborn screening, inborn errors of metabolism, and the Consortium.

The New England Consortium will be central to the work of the New England Regional Genetics and Newborn Screening Collaborative. This project was recently funded by HRSA (Maternal and Child Health Bureau) and will continue through 2007. The goals proceed from the establishment of a collaborative network to a focus on practice models and then activities for broadening education about newborn screening and genetic literacy. Another current investigation is the expanded newborn screening study, which compares newborn identification by expanded screening to clinical identification in children with biochemical genetic disorders in terms of the interaction between the parents and the health care system and elements of health outcome for the child and family.

Community outreach is another important goal of the New England Consortium. The Teen Challenge Program, adult weekends, and camps include some of the programs that the Consortium helps to support. Current metabolic events and other support group and resource information can be found on the Patients & Families Section of the Consortium website. The New England Consortium Website is also a resource for expanding knowledge of metabolic disorders and improving the delivery of health care to patients in our region. Through the Scientists & Physicians Section of the website, Jonathan Picker, MD, PhD, Mark Korson, MD, Harvey Levy, MD, and other metabolic physicians have launched the development of newborn screening protocols to aid pediatricians in recognizing and treating individuals with metabolic disorders. It is the hope of the Consortium that children brought into the emergency room will be identified and treated more expediently through the use of these versatile protocols.

Through the New England Consortium website we have developed a multi-tiered center for information where individuals can learn about metabolic disorders, support groups, the latest recipes for restricted diets, current events in New England , and more as the Consortium continues to develop and expand.