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Volunteer in Public Policy
Volunteer by writing letters to your elected officials. The goal is to call attention to issues that affect the small population of people with rare cancers such as ACC and to encourage elected officials to take action. Here is a sample letter:
The Honorable [first,
last name]
United States Senate
Washington, DC 20510
Dear Senator [last name]:
OR
The Honorable [first,
last name]
U.S. House of Representatives
Washington, DC 20515
Dear Representative [last name]:
On November 6, 2002, the President signed both the Rare
Diseases
Act, H.R. 4013, and the Rare Diseases Orphan Product Development Act,
H.R. 4014, into law. I, along with the entire rare disease
community of over 25 million Americans affected by rare "orphan"
diseases, worked long and hard to make this legislation a reality, but
without your help and support, this legislation may never have become a
reality. On behalf of Adrenal Cortical Cancer (ACC) survivors, I
thank you. ACC afflicts about 1 in 2 million people per year and
currently has no proven adjuvant treatment.
The Rare Diseases Act (P.L. 107-280), sponsored by Representative John Shimkus, provides for the statutory authorization for the existing Office of Rare Diseases (ORD) at the NIH. This office will enhance the national investment in the development of diagnostics and treatments for patients with rare disorders. It also authorizes Congress to provide additional funding for the office that will augment NIH Institutes' research for neglected rare diseases in order to take advantage of emerging research opportunities.
The Rare Diseases Orphan Product Development Act (P.L. 107-281), sponsored by Representative Mark Foley, authorizes Congress to increase funding for the Food and Drug Administration's Orphan Product Research Grants Program, which provides funding to academic scientists and small companies to conduct pivotal clinical trials on new orphan drugs, medical devices, and medical foods for rare diseases.
Increased funding for these programs is a win-win situation for the entire nation. Patients win when their symptoms are properly diagnosed and treated. Families win when their loved ones no longer suffer. Society, as a whole, wins when patients are able to return to school or work to become productive tax-paying citizens. Pharmaceutical and biotechnology companies win when they are able to develop new therapeutic products. The scientific community wins when the knowledge they gain can be applied to more prevalent diseases. And, finally, the government wins when the drain on healthcare dollars is minimized.
That is why I am asking once again for your help to ensure
that the
authorizations outlined in H.R. 4013 and H.R. 4014 are included in the
FY 2004 appropriations for the National Institutes of Health (NIH) and
the Food and Drug Administration (FDA). This is important to me and to
the patients I represent because of the lack of proven treatments for
the rare cancer, Adrenal
Cortical Carcinoma.
Again, I thank you for recognizing that without the Office of Rare Diseases at the NIH and the Orphan Product Research Grant Program administered by the FDA, many people across the United States affected by rare diseases would live without the prospect of a cure or a lifesaving therapy. With your help, we know that lifesaving research into rare "orphan" diseases will continue.
I look forward to your positive response to this important request.
Sincerely,
[your name]
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