Related News
-
Kids v Cancer Supports the '…
Monday, August 9, 2010
WASHINGTON -- Kids v Cancer applauds Senators Sam Brownback (R-KS), Sherrod Brown (D-OH), and Al Franken (D-MN) for… more...
-
Analysis: Rare Diseases Lure…
Wednesday, August 4, 2010
In seeking to acquire biotechnology company Genzyme Corp (GENZ.O), Sanofi-Aventis (SASY.PA) is hoping to gain entry… more...
-
250 Million People Worldwide…
Tuesday, March 9, 2010
DANA POINT, Calif. -- The Global Genes Project (www.globalgenesproject.org), a worldwide rare disease awareness… more...
-
Rare Disease Advocates Unite…
Friday, February 26, 2010
DANA POINT, CA -- The Global Genes Project (www.globalgenesproject.org), today announced that its rare disease campaign… more...
-
Novartis Shifts Focus to Rare…
Tuesday, December 22, 2009
Like most pharmaceutical companies' CEOs, Daniel Vasella, chairman and chief executive of Switzerland's Novartis AG, is… more...
News
-
CheckOrphan NewsFlash April 30,…
4/30/2010
CheckOrphan NewsFlash for Tuesday, March 30, 2010: breaking news about rare diseases, orphan diseases, orphan drugs,…
-
CheckOrphan NewsFlash April 9,…
4/09/2010
CheckOrphan NewsFlash for Friday, April 9, 2010: breaking news about rare diseases, orphan diseases, orphan drugs, and…
-
CheckOrphan NewsFlash April 1,…
4/01/2010
CheckOrphan NewsFlash for Thursday, April 1, 2010: breaking news about rare diseases, orphan diseases, orphan drugs,…
NewsFlash
More News
-
Tot With Disorder Is 'the Happiest Kid'
When most people get a cold, they cough and sneeze and sniffle until it goes awayCharlie-… more...
-
Norfolk Baby's Life Hangs by a Thread
A community is rallying to fund comforts and pleasures for a seriously-ill north Norfolk… more...
-
Goddess Hair Extensions Founder…
SUNNYVALE, Calif. -- Sheila Matechuk, Developer of Goddess Hair Extensions &… more...
-
St. Jude, Chili's Expand Online Giving…
MEMPHIS, Tenn. - St. Jude Children's Research Hospital® and Chili's® Grill &… more...
-
Inaugural Fundraiser to Be Held to Stop…
The luminous glow of a firefly in the dark sky can be seen as a symbol of hope that… more...
People News
Task Force May Aid Those With Rare Diseases
| More
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
Log in to comment.