SEC. 2. FINDINGS. 
The Congress finds as follows: 
(1) Scleroderma is a chronic, disabling and 
often fatal autoimmune disease in which the body’s 
soft tissues contract and harden due to an over-
production of collagen. 
(2) Scleroderma causes damage to one or more 
of the body’s organ systems, including the skin, 
heart, lungs, kidneys, gastrointestinal tract, and 
blood vessels. 
(3) It is estimated that 300,000 people in the 
United States suffer from scleroderma, 80 percent of 
whom are women often diagnosed during their child 
bearing years. 
(4) Choctaw Native Americans, African-Ameri-
cans, and Hispanics are disproportionately affected 
by scleroderma and tend to exhibit more rapidly pro-
gressing and severe cases of the disease. 
(5) The causes of scleroderma are unknown. 
(6) Scleroderma is associated with many other 
conditions 
including 
pulmonary 
hypertension, 
gastroparesis, Raynaud’s phenomenon, Sjo¨gren’s 
Syndrome and lupus. 
(7) The estimated total annual economic impact 
of scleroderma in the United States is in excess of 
$1,500,000,000. 
VerDate Nov 24 2008 
06:27 May 16, 2009
Jkt 079200
PO 00000
Frm 00002
Fmt 6652
Sfmt 6201
E:\BILLS\H2408.IH
H2408
hsrobinson on PROD1PC76 with BILLS
(8) Annual Federal support for scleroderma re-
search at the National Institutes of Health is cur-
rently estimated at $20,000,000. 
SEC. 3. NATIONAL INSTITUTE OF ARTHRITIS AND MUS-
CULOSKELETAL 
AND 
SKIN 
DISEASES; 
SCLERODERMA RESEARCH EXPANSION. 
(a) IN GENERAL.—The Director of The National In-
stitute of Arthritis and Musculoskeletal and Skin Diseases 
shall expand, intensify, and coordinate the activities of the 
Institute with respect to scleroderma, with particular em-
phasis on the following areas: 
(1) Research focused on the etiology of 
scleroderma and the development of new treatment 
options. 
(2) Clinical research to evaluate new treatments 
options. 
(3) Basic research on the relationship between 
scleroderma and secondary conditions such as pul-
monary hypertension, gastroparesis, Raynaud’s phe-
nomenon, Sjo¨gren’s Syndrome (and other diseases as 
determined by the Director). 
(4) Establishment of scleroderma patient reg-
istries, including family and childhood onset reg-
istries. 
VerDate Nov 24 2008 
06:27 May 16, 2009
Jkt 079200
PO 00000
Frm 00003
Fmt 6652
Sfmt 6201
E:\BILLS\H2408.IH
H2408
hsrobinson on PROD1PC76 with BILLS
(5) Support for training of new clinicians and 
investigators with expertise in scleroderma. 
(b) BIENNIAL REPORTS.—As a part of the biennial 
report made under section 403 of the Public Health Serv-
ice Act (42 U.S.C. 283), the Secretary shall include infor-
mation on the status of scleroderma research at the Na-
tional Institutes of Health. 
(c) AUTHORIZATION OF APPROPRIATIONS.— 
(1) IN GENERAL.—For the purpose of carrying 
out subsection (a), there are authorized to be appro-
priated 
$25,000,000 
in 
fiscal 
year 
2010, 
$30,000,000 in fiscal year 2011, and $35,000,000 in 
fiscal year 2012. 
(2) RESERVATIONS.—Of the amounts author-
ized to be appropriated under paragraph (1), not 
more than 15 percent shall be reserved for the train-
ing of qualified health professionals in biomedical re-
search focused on scleroderma. 
SEC. 
4. 
PROMOTING 
PUBLIC 
AWARENESS 
OF 
SCLERODERMA. 
(a) IN GENERAL.—The Secretary, acting through the 
Director of the Centers for Disease Control and Preven-
tion, shall carry out an educational campaign to increase 
public awareness of scleroderma. Print, video, and Web- 
VerDate Nov 24 2008 
22:10 May 15, 2009
Jkt 079200
PO 00000
Frm 00004
Fmt 6652
Sfmt 6201
E:\BILLS\H2408.IH
H2408
hsrobinson on PROD1PC76 with BILLS
based materials distributed under this program may in-
clude— 
(1) basic information on scleroderma and its 
symptoms; 
(2) information on the incidence and prevalence 
of scleroderma; 
(3) diseases and conditions affiliated with 
scleroderma; or 
(4) the importance of early diagnosis and treat-
ment. 
(b) DISSEMINATION
OF INFORMATION.—The Sec-
retary is encouraged to disseminate information under 
subsection (a) through a cooperative agreement with a na-
tional nonprofit entity with expertise in scleroderma. 
(c) REPORT TO CONGRESS.—Not later than Sep-
tember 30, 2010, the Secretary shall report to the Com-
mittee on Energy and Commerce of the House of Rep-
resentatives, the Committee on Health, Education, Labor, 
and Pensions of the Senate, and the Committee on Appro-
priations of the House of Representatives and the Senate 
on the status of activities under this section. 
(d) AUTHORIZATION OF APPROPRIATIONS.—For the 
purpose of carrying out this section, there is authorized 
VerDate Nov 24 2008 
22:10 May 15, 2009
Jkt 079200
PO 00000
Frm 00005
Fmt 6652
Sfmt 6201
E:\BILLS\H2408.IH
H2408
hsrobinson on PROD1PC76 with BILLS
to be appropriated $2,500,000 for each of fiscal years 
2010, 2011, and 2012. 
Æ 
VerDate Nov 24 2008 
22:10 May 15, 2009
Jkt 079200
PO 00000
Frm 00006
Fmt 6652
Sfmt 6301
E:\BILLS\H2408.IH
H2408
hsrobinson on PROD1PC76 with BILLS