Genetic Non-Discrimination Act (S. 318/H.R. 602)

[Guest guest]

)

> Hi Everyone. This came to me through NORD (national orginazation for Rare

> Diseases). This is a very importatnt bill that is coming up to vote soon.

In

> the past several months researchers have been reporting fantastic

> advancements in thier research. All of which will defenitely help us some

> day.

> Please help if possible.

> Thanks

> R.

>

> Genetic Non-Discrimination Act (S. 318/H.R. 602)

>

>

> Below is a message from the staff of Rep. Louise Slaughter (D-NY)

regarding

> the Genetic Nondiscrimination Act. Support for the legislation continues

to

> grow but additional cosponsors are needed if bill is to pass this year.

It

> appears that support from Rep. of Louisiana is critical. If

you

> know of individuals or organizations in his district who would be willing

> to

> contact Mr. asking for his support of the bill, I would encourage

you

> to contact them as soon as possible.

>

> If you have any questions, please contact me. Thank you for your

continuing

> support of the Volunteers in Public Policy program.

>

> Diane E. Dorman, Sr. Dir. for Public Policy

> National Organization For Rare Disorders - Washington Office

> 3907 Blackburn Lane, #22, Burtonsville, MD 20866

> Office/, Fax/, Cell/

> ddorman@...

>

> Greetings, all--

>

> We have one particular Democrat, Rep. of Louisiana, who will

> not cosponsor H.R. 602 until he sees more pointed interest in the bill

from

> his constituency. I am therefore putting out a special call to all

> organizations that may have members or chapters in his district to have

> them write, e-mail and call Rep. ASAP.

>

> Rep. represents the Seventh District of Louisiana, which which

> comprises the southwestern coastal area of the state. The major cities in

> his district are Lake and Lafayette. Following are some

> specialized talking points for you and your Members to use.

>

> Thanks so much for your help!

>

> ** The bill has 241 bipartisan cosponsors.

>

> ** The bill is supported by other Members of the Louisiana delegation,

> including Rep. Baker.

>

> ** Rep. represents a sizable number of Cajuns and should therefore

> be especially sensitive to genetics issues. The relatively small gene

> pool of the Cajun community has given rise to a spectrum of genetic

> disorders

> including Friedreich's ataxia, Usher syndrome (deaf-blindness), skull

> deformities, visual impairment and hearing loss. Other health problems

> that have a significant genetic component and occur at a

disproportionately

> higher frequency among Cajuns are diabetes, cancer, and heart disease.

The

> Cajuns have risks of up to 250 percent in excess of the national average

> for many of these genetic diseases.

> ** The protections in H.R. 602 would be invaluable to the Louisiana

> State University Molecular and Human Genetics Center of Excellence, as

> well as its Center for Acadiana Genetics and Hereditary Health Care.

With

> H.R.

> 602's guarantees of nondiscrimination in place, patients could feel free

> to participate in the Center's research.

>

> ** H.R. 602 is supported by the Genetic Alliance, which includes

> members like the Friedrich's Ataxia Foundation.

>

>

>

>