Re: Subject Reference: Bush signs bill creating 'Office of Rare Diseases'

[Guest guest]

Hi Bonnie,

Let's try to research this Friday, as I think this is something which could be important, and perhaps we need to give it a "push"!

Thanks for bringing this to our attention!

MM

Martha Murdock, DirectorNational Silicone Implant Foundation | Dallas Headquarters"Supporting Survivors of Medical Implant Devices"4416 Willow LaneDallas, TX 75244-7537

----- Original Message -----

From: Bos@...

BreastImplantNews@...

Sent: Thursday, November 07, 2002 10:22 AM

Subject: Re: Subject Reference: Bush signs bill creating 'Office of Rare Diseases'

Having some trouble with this announcement. . .does this mean the pres just found out about the ORD? Is it a place to provide jobs? If it isn't given funding, what is it for? Is this an empty bill designed to make us think something is actually being done--for anyone? The Office of Rare Diseases at NIH was established in 1993. (rarediseases.info.nih.gov/info-diseases.html) Why isn't it listed as an office, center or institute of the NIH? Put it in Search. It does not list anything re silicone and to date the "silicosis" page is under construction. It includes the "antiphospholipid syndrome" which has been shown, at least in other countries, not be be so rare--in fact over 50% of people tested had it. BI women that I've talked to have it. It provides a link to the National Organization of Rare Disorders (rarediseases.org) (a federation of voluntary health organizations) and I suggest putting into Search "foreign body response" "siliconosis" and "human adjuvant disease" Bonnie ==^^===============================================================

This email was sent to: MAM-NSIF@...

EASY UNSUBSCRIBE click here: http://topica.com/u/?a2iT7o.a2uBa2.TUFNLU5T

Or send an email to: BreastImplantNews-unsubscribe@...

T O P I C A -- Register now to manage your mail!

http://www.topica.com/partner/tag02/register

==^^===============================================================

[Guest guest]

FYI!

'WE' need to "correct" this major oversight!

MM

Martha Murdock, DirectorNational Silicone Implant Foundation | Dallas Headquarters"Supporting Survivors of Medical Implant Devices"4416 Willow LaneDallas, TX 75244-7537

----- Original Message -----

From: RSLB49@...

BreastImplantNews@...

Sent: Friday, November 08, 2002 1:24 PM

Subject: Re: Subject Reference: Bush signs bill creating 'Office of Rare Diseases'

In a message dated 11/7/2002 12:57:26 AM Central Standard Time, parfumgigi@... writes:

Did this bill include silicone, since it's totally liable for hundreds ofrare critical diseases, no it's still being covered up. It should have, since they are getting 1.9 million of our "Supposed to Be Money" from Dow! Silicone Suckered ==^^===============================================================

This email was sent to: MAM-NSIF@...

EASY UNSUBSCRIBE click here: http://topica.com/u/?a2iT7o.a2uBa2.TUFNLU5T

Or send an email to: BreastImplantNews-unsubscribe@...

T O P I C A -- Register now to manage your mail!

http://www.topica.com/partner/tag02/register

==^^===============================================================