Prenatal Booklet about Down Syndrome

When a person gets a diagnosis of Down Syndrome for their new baby, it is a scary and unfamiliar topic. A lot of information being presented is poorly written and is more worrisome rather then encouraging. This publication will be such a help to parents with the diagnosis!

Doctors, Genetic Counselors, Medical Geneticists and Down Syndrome
Advocates Agree on Prenatal Diagnosis Information to be Published

Balanced and accurate informational booklet will soon be available to medical
professionals and families throughout the United States.

October 4, 2010 (New York, NY).The National Down Syndrome Society (NDSS) is
pleased and excited to announce that an agreement has been reached on the contents
of a prenatal booklet about Down syndrome which will be made available to physicians
and women throughout the United States who receive a prenatal diagnosis of Down
syndrome.

NDSS believes that the prenatal booklet, Understanding a Down Syndrome Diagnosis,
developed by Canister, which has been distributed to Down syndrome organizations
nationwide through funding provided by the Joseph P. Kennedy Foundation, is
accurate and up-to-date and will benefit thousands of women and their families.
According to Madeleine Will, NDSS VP of Public Policy, “This historic agreement
ensures that women and their families can learn the facts about Down syndrome that
reflect the experiences of thousands and thousands of families who are living with a
family member with Down syndrome. Medical professionals who work with parents and
families in the Down syndrome community have provided up to date and unbiased
information about Down syndrome in a new era when prenatal diagnosis is being
offered increasingly to all pregnant women and their families.”

The booklet was reviewed by an Education Advisory which was assembled by NDSS
and the National Down Syndrome Congress (NDSC) as part of the Kennedy grant and
then submitted to a Consensus Group made up of representatives from NDSS, NDSC,
the National Society of Genetic Counselors, the American College of Medical Genetics
and the American College of Obstetricians and Gynecologists, who also provided input
to the final version of the booklet revised by Stephanie Meredith at Canister. When the
final version is printed it will contain a dedication to Mrs. Eunice Kennedy Shriver and
the following statement agreed upon by the member organizations of the Consensus
Group:

“This booklet was prepared with assistance from the Down Syndrome Consensus
Group, which includes representatives of The National Society of Genetic Counselors,
The American College of Medical Genetics, The American College of Obstetricians
and Gynecologists, The National Down Syndrome Society, The National Down
Syndrome Congress.”

“This was a significant collaborative process with representatives of five national
organizations contributing expert input to finish the booklet with accurate, balanced
information and resources for parents with a prenatal diagnosis of Down syndrome.
The Down Syndrome Consensus Group was initiated in 2008 by the University of
South Carolina’s Genetic Counseling Program and Center for Disability Resources to
promote shared understanding of health professional and advocacy community
perspectives on Down syndrome among the five national organizations” states Janice
Edwards, Clinical Professor and Director of USC’s Genetic Counseling Program.

Until Next Time!

Lots of Love,

Erica