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Task Force May Aid Those With Rare Diseases

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Thursday, June 19, 2008

By Susan Haigh

The Public Health Committee is planning to create a task force this fall that will come up with proposed legislation for next January`s legislative session.

"This is the beginning and not the end of this discussion," said Sen. Mary Ann Handley, D-Manchester, the committee co-chairman.

At a special hearing on Tuesday, genetics experts and a Danbury-based organization that helps people suffering from rare diseases urged legislators to help families with everything from an early and accurate diagnosis to covering the cost of treatment.

There are an estimated 6,000 to 7,000 diseases in the U.S. that are considered rare, affecting 200,000 or fewer Americans. Some affect a few hundred. Others impact a few dozen.

Mary Dunkle, vice president for communications at the National Organization of Rare Diseases, said the legislature can enact bills that provide services to families with older, disabled children, cover gaps in reimbursements for medically necessary foods, and make sure there is adequate screenings of newborns for certain diseases.

Copyright 2008 Associated Press. All rights reserved.

Source: Associated Press via Courant.com

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