The New England Consortium of Metabolic Programs brings together healthcare professionals at all levels involved in identifying and treating individuals with metabolic disorders. Its membership of over 100 professionals includes 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. Several representatives from parent organizations and individuals with metabolic disorders also participate. The Consortium 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 of Metabolic Programs is centered at Boston Children’s Hospital as the Coordinating Center. In addition to its annual meeting held each November, the Consortium holds a monthly Planning Group Meeting at Boston Children’s Hospital. The New England Consortium collaborates with other regional groups, including the New England Connection for PKU and Allied Disorders (a parent/patient support group) and the New England Genetics Collaborative (one of seven regional Collaboratives funded by the federal Health Resources and Services Administration (HRSA).
The Consortium website is available to professionals, patients, and families and provides access to information about metabolic disorders, newborn screening protocols, acute illness protocols, treatment guidelines, transition to adult care, community outreach activities, and support groups. Powerpoint presentations, videos, brochures and much more can be downloaded and distributed.
Membership in the Consortium is open to professionals and representatives from industry and parent/patient organizations. Please visit our membership page for more information about joining the Consortium.
The Consortium does not require annual dues from members. Vendors who exhibit at our annual meeting can make a donation to support the Consortium. Additional funding for the Consortium’s operating expenses has been provided by BioMarin. Boston Children’s Hospital provides administrative support and meeting space.
We welcome your comments and suggestions!
– Susan Waisbren, PhD
Director, New England Consortium of Metabolic Programs