(2) Cavernous angioma is a devastating blood 
vessel disease that is characterized by the presence 
of vascular lesions that develop and grow within the 
brain and spinal cord. 
(3) Detection of cavernous angioma lesions is 
achieved through costly and specialized medical im-
aging techniques. These techniques are often not 
readily available where patients live, and require se-
dation for children and disabled adults. 
(4) Cavernous angioma is a common type of 
vascular anomaly, but individuals may not be aware 
that they have the disease until the onset of serious 
clinical symptoms. 
(5) 
Individuals 
diagnosed 
with 
cavernous 
angioma may experience neurological deficits, sei-
zure, stroke, or sudden death. 
(6) Due to limited research with respect to cav-
ernous angioma, there is no treatment regimen for 
the disease other than brain and spinal surgery. 
(7) Some individuals with cavernous angioma 
are not candidates for brain surgery, and no treat-
ment option is available for such individuals. 
(8) There is a shortage of physicians who are 
familiar with cavernous angioma and affected indi-
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viduals may find it difficult to receive timely diag-
nosis and appropriate care. 
(9) Due to the presence of a specific disease- 
causing mutation, termed the ‘‘common Hispanic 
mutation’’ that has passed through as many as 17 
generations of Americans descended from the origi-
nal Spanish settlers of the Southwest in the 1590s, 
New Mexico has the highest population density of 
cavernous angioma in the world. Cavernous angioma 
affects thousands of individuals in New Mexico. 
(10) Other States with high rates of cavernous 
angioma include Texas, Arizona, and Colorado. 
(11) To address the public health threat posed 
by cavernous angioma in New Mexico and through-
out the United States, there is a need for a Cav-
ernous Angioma Clinical Care, Awareness, Research, 
and Education Center of Excellence in order to pro-
vide a model medical system for other such centers, 
to facilitate medical research to develop a cure for 
cavernous angioma, and to enhance the medical care 
of individuals with cavernous angioma nationwide. 
(12) Given the existing programs and expertise 
in the southwest, the first coordinated, centralized 
Cavernous Angioma Clinical Care, Awareness, Re-
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search, and Education Center of Excellence should 
be established there. 
SEC. 3. CAVERNOUS ANGIOMA CARE CENTER. 
Part B of title IV of the Public Health Service Act 
(42 U.S.C. 284 et seq.) is amended by adding at the end 
the following: 
‘‘SEC. 409K. CAVERNOUS ANGIOMA CARE CENTERS OF EX-
CELLENCE. 
‘‘(a) ESTABLISHMENT OF SOUTHWEST CAVERNOUS 
ANGIOMA CARE CENTER OF EXCELLENCE.—The Sec-
retary shall establish a coordinated, centralized Cavernous 
Angioma Clinical Care, Awareness, Research, and Edu-
cation Center of Excellence at a university health sciences 
research and clinical center in the southwest United States 
(referred to in this section as the ‘CARE Center’) to pro-
vide basic, translational, and clinical research with respect 
to new diagnostic, prevention, and novel treatment meth-
odology for individuals with cavernous angioma, and to 
serve as a model for medical schools and research institu-
tions and to provide support to such schools and institu-
tions. 
‘‘(b) REQUIREMENTS.—The CARE Center estab-
lished under subsection (a) shall— 
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‘‘(1) consist of full- and part-time cavernous 
angioma researchers, clinicians, and medical staff in-
cluding— 
‘‘(A) a medical director with expertise in 
cavernous angioma research and clinical care; 
‘‘(B) a headache or pain specialist; 
‘‘(C) an epilepsy specialist; 
‘‘(D) a psychiatrist; 
‘‘(E) a neuropsychologist; 
‘‘(F) a dermatologist; 
‘‘(G) a nurse practitioner with a specialty 
in neurology or neurosurgery; 
‘‘(H) a nurse coordinator to facilitate pa-
tient advocacy and research; 
‘‘(I) a research coordinator to facilitate re-
search; 
‘‘(J) a clinical nurse dedicated to clinical 
care and in-patient management; 
‘‘(K) a radiology specialist; 
‘‘(L) a clinical vascular fellow; 
‘‘(M) a basic science postdoctoral fellow; 
and 
‘‘(N) a genetic counselor; 
‘‘(2) be affiliated with a university medical cen-
ter with an accredited medical school that provides 
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education and training in neurological disease, in 
which medical students and residents receive edu-
cation and training in the diagnosis and treatment 
of cavernous angioma; 
‘‘(3) maintain a program through which 
postdoctoral fellows receive research training in 
basic, translational, or clinical cavernous angioma 
research; 
‘‘(4) recruit new innovative researchers and cli-
nicians to the field of cavernous angioma care and 
research; 
‘‘(5) establish a continuing medical education 
program through which medical clinicians receive 
professional training in cavernous angioma care and 
patient management; 
‘‘(6) maintain programs dedicated to patient 
advocacy, patient outreach, and education, includ-
ing— 
‘‘(A) launching a multimedia public aware-
ness campaign; 
‘‘(B) creating and distributing patient edu-
cation materials for distribution by national 
physician and surgeon offices; 
‘‘(C) establishing an education program for 
elementary and secondary school nurses to fa-
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cilitate early detection and diagnosis of cav-
ernous angioma; 
‘‘(D) coordinating regular patient and fam-
ily-oriented educational conferences; and 
‘‘(E) developing electronic health teaching 
and communication tools and a network of pro-
fessional capacity and patient and family sup-
port; 
‘‘(7) be capable of establishing and maintaining 
communication with other major cavernous angioma 
research and care institutions for information shar-
ing and coordination of research activities; 
‘‘(8) facilitate translational projects and col-
laborations for clinical trials; and 
‘‘(9) establish an advisory board to advise and 
assist the Director of the CARE Center composed 
of— 
‘‘(A) at least 1 individual with cavernous 
angioma or family member of such an indi-
vidual; 
‘‘(B) at least 1 representative of a patient 
advocacy group; 
‘‘(C) at least 1 physician and at least 1 
scientist with expertise in cavernous angioma 
and other relevant biomedical disciplines; and 
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‘‘(D) at least 1 representative of the insti-
tution affiliated with the CARE Center. 
‘‘(c) DIRECTOR OF CARE CENTER.— 
‘‘(1) IN GENERAL.—The CARE Center shall be 
headed by a Director, who shall have expertise in 
cavernous angioma patient care and research. 
‘‘(2) DUTIES OF THE DIRECTOR.—To promote 
increased understanding and treatment of cavernous 
angioma and provide the highest quality medical and 
surgical care for individuals with cavernous angioma, 
the Director of the CARE Center shall— 
‘‘(A) ensure that the CARE Center pro-
vides community-, family-, and patient-centered, 
culturally sensitive care; 
‘‘(B) encourage and coordinate opportuni-
ties for individuals to participate in clinical re-
search studies that will advance medical re-
search and care; and 
‘‘(C) develop the CARE Center as a model 
and training facility for other facilities through-
out the United States that are engaged in re-
search regarding, and care for individuals with, 
cavernous angioma. 
‘‘(d) REPORTING.— 
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‘‘(1) IN
GENERAL.—Not later than 2 years 
after the date of enactment of the Cavernous 
Angioma CARE Center Act of 2012, and biannually 
thereafter, the advisory board established under sub-
section (b)(9) shall submit a report on the activities 
of the CARE Center to the Secretary. 
‘‘(2) CONTENT.—The report described in para-
graph (1) shall include— 
‘‘(A) a description of the progress made in 
implementing the requirements of this section; 
‘‘(B) a description of the amount expended 
on the implementation of such requirements; 
and 
‘‘(C) a description of other activities and 
outcomes of the CARE Center, as appropriate. 
‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—To es-
tablish and operate the Care Center, there is authorized 
to be appropriated $2,000,000 for fiscal year 2013.’’. 
Æ 
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