The New England Consortium of Metabolic Programs brings together healthcare professionals at all levels involved in identifying and treating individuals with metabolic disorders. Consortium projects have included: developing acute illness materials for the treatment of metabolic disorders to be used by general practitioners and emergency room staff, and sponsoring social support events around New England.
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.
Our goals
Disseminate information on inborn errors of metabolism
Jointly develop and conduct research and quality improvement projects
Establish uniform treatment guidelines for individuals with metabolic disorders
Provide training for students in medicine and related fields
Collaborate in the development of social support programs and educational materials
Support organizations for parents and adults with metabolic disorders
The New England Consortium of Metabolic Programs is centered at Boston Children’s Hospital as the Coordinating Center. 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, 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 or sponsor our annual meeting provide for the Consortium’s operating expenses. Boston Children’s Hospital provides administrative support and meeting space.
We welcome your comments and suggestions!
– Susan Waisbren, PhD, Founder, New England Consortium of Metabolic Programs