SEC. 2. FINDINGS. 
Congress finds the following: 
(1) Neuromyelitis optica spectrum disorder (in 
this section and section 3 referred to as ‘‘NMOSD’’) 
is a devastating neurologic disease leading to blind-
ness, paralysis, and premature death. 
(2) There are an estimated 16,000 to 17,000 
people with NMOSD in the United States and more 
than a quarter-million patients worldwide. 
(3) Women are affected up to 7 times more 
than men, and Afro-Caribbeans and Latino persons 
are about 2.5 times more predisposed to NMOSD 
than Caucasians. The reasons why Blacks and His-
panics are disproportionately affected cannot be fully 
understood without further studies. Furthermore, 
why NMOSD disproportionately occurs in females is 
unknown. 
(4) The average age at diagnosis is approxi-
mately 35 to 45 years, a peak window of time that 
further compounds the burden of NMOSD on par-
enthood and careers of women and men. The age 
range of NMOSD patients is broad and includes 
children as young as 3 years of age and adults as 
old as 90. 
(5) NMOSD imposes substantial costs for af-
fected patients and their families both in financial 
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costs such those associated with medical care, pre-
scription medicines, and emergency room visits, as 
well as in opportunity costs such as its negative im-
pact on maintaining gainful employment or attend-
ing school or career development programs. 
(6) The origins of NMOSD are unknown, but 
it is hypothesized to be autoimmune in nature. Col-
lectively, autoimmune diseases currently affect ap-
proximately 1 in 10 Americans. Without a clear un-
derstanding of the causes of NMOSD, development 
of cures that save and improve lives and reduce the 
substantial associated health care costs will not be 
possible. 
(7) Despite the recent Food and Drug Adminis-
tration approval of three medications for NMOSD, 
there remains an unmet need for more effective and 
safe therapies to spare these patients from this re-
current disease with its accumulating neurologic dis-
ability. 
(8) Because of their relatively low overall inci-
dence, orphan diseases like NMOSD frequently do 
not receive sufficient attention and research funding. 
Of special importance is the opportunity for the re-
markable progress made recently regarding NMOSD 
to serve as— 
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(A) a model for solutions to rare and 
immunologic diseases; and 
(B) an exemplary therapeutic disease tar-
get for immunosuppressive therapies and for 
determining vaccination benefits and risks rel-
ative to COVID–19. 
(9) No single institution has a sufficient num-
ber of patients to independently conduct research 
that will adequately address the cause, prevention, 
treatment, and potential cure of NMOSD. Further-
more, there is a paucity of resources available for re-
generative medicine research in NMOSD that will be 
required to repair optic nerve and spinal cord dam-
age caused by NMOSD and thus to restore health. 
(10) There has been no comprehensive study 
analyzing all relevant clinical, biological, and epide-
miological aspects of NMOSD to identify potential 
risk factors and biomarkers for NMOSD. 
(11) We can apply our understanding of 
NMOSD to the study of other autoimmune diseases, 
including type 1 diabetes mellitus, rheumatoid ar-
thritis, psoriasis, multiple sclerosis, systemic lupus 
erythematosus, and many others. 
SEC. 3. SENSE OF CONGRESS. 
It is the sense of Congress that— 
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(1) there is a need to establish and coordinate 
a synergistic, multicenter research effort based on 
collaboration between regional consortia and govern-
mental and nongovernmental entities in order to— 
(A) comprehensively study the causes of 
NMOSD; 
(B) identify potential biomarkers of disease 
activity; 
(C) leverage recent efforts in developing 
approved therapies for NMOSD as a model for 
developing breakthrough therapies for other 
autoimmune diseases; and 
(D) highlight NMOSD as a model disease 
to better understand the potential benefits and 
risks of immunosuppressive therapy and innova-
tive vaccine strategies targeting COVID–19; 
(2) there is a need to encourage a collaborative 
effort among academic medical centers comprising 
epidemiological study groups capable of gathering 
comprehensive and detailed information for each pa-
tient enrolled in those groups; and 
(3) the effort referred to in paragraph (2) 
should facilitate investigation of environmental, nu-
tritional, genetic, and treatment factors with respect 
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to the pathological and epidemiological characteris-
tics of NMOSD. 
SEC. 
4. 
ESTABLISHMENT 
OF 
THE 
NATIONAL 
NEUROMYELITIS 
OPTICA 
SPECTRUM 
DIS-
ORDER CONSORTIUM. 
Part B of title IV of the Public Health Service Act 
(42 U.S.C. 284 et seq.) is amended by adding after section 
409J the following new section: 
‘‘SEC. 409K. NATIONAL NEUROMYELITIS OPTICA SPECTRUM 
DISORDER CONSORTIUM. 
‘‘(a) 
ESTABLISHMENT
OF
THE
NATIONAL 
NEUROMYELITIS OPTICA SPECTRUM DISORDER CONSOR-
TIUM.— 
‘‘(1) IN GENERAL.—Not later than 1 year after 
the date of the enactment of this section, the Sec-
retary, acting through the Director of NIH, and in 
coordination with the Director of the National Insti-
tute on Minority Health and Health Disparities, 
shall establish, administer, and coordinate a Na-
tional Neuromyelitis Optica Spectrum Disorder Con-
sortium (in this section referred to as the ‘NMOSD 
Consortium’) for the purposes described in para-
graph (2). 
‘‘(2) PURPOSES.—The purposes of the NMOSD 
Consortium shall be the following: 
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