Grants Enhance Services, Supports for Individuals with Genetic Disorders
By Matthew Gianino, Institute On Disability / UCED
July 25, 2007
Since newborn screening for genetic disorders like cystic fibrosis and
sickle cell disease has become a standard public health practice, more
and more genetic diagnoses are being addressed early in life. In view
of this, the Institute on Disability, in partnership with the New Hampshire
Institute for Health Policy and Practice at UNH and the Dartmouth-Hitchcock
Medical Center Department of Pediatrics, Division of Medical Genetics,
intends to enhance the services and supports for individuals with genetic
disorders through a new grant.
The New England Regional Genetics and Newborn Screening Collaborative
(New England RC) grant, awarded by the U.S. Department of Health and
Human Services in June, will address the needs of individuals, agencies,
and health care providers who interact with and treat individuals with
genetic disorders and their families.
The $4 million grant, to be received over five years, will provide technical
assistance, accessible information, educational opportunities, and other
support for public health officials, consumers, advocates, primary and
specialty health care providers, and other agencies and individuals who
serve as formal and informal supports to those with genetic disorders
throughout the New England region.
As part of the project, the New England RC will encourage collaboration
by establishing a Regional Coordinating Center at the Institute on Disability
at UNH. The primary goal of the New England RC is to assure that individuals
with genetic disorders and their families have access to quality care,
appropriate genetics expertise, and information that provides accessible,
family-centered, continuous, comprehensive, coordinated, compassionate,
and culturally effective care.
One activity of the Regional Coordinating Center will be to organize
and support six state teams, assuring that resources to solve local needs
are readily available to all. The state teams will facilitate access
to genetics services and technology, serve as focal points for genetics
education and information, and examine and address ethical, legal, and
social issues, as well as current public policy and public health infrastructure.
To learn more about the New England RC, contact Amy Philbrick Schwartz,
project coordinator and associate director and clinical assistant professor,
New Hampshire Institute for Health Policy and Practice, at 2-5099 or
amy.schwartz@unh.edu.
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