IV 
115TH CONGRESS 
1ST SESSION 
H. RES. 464 
Designating the week of July 17 through July 21, 2017, as ‘‘National Ecto-
dermal Dysplasias Week’’ and supporting the goals and ideals of National 
Ectodermal Dysplasias Week to raise awareness and understanding of 
ectodermal dysplasias. 
IN THE HOUSE OF REPRESENTATIVES 
JULY 20, 2017 
Ms. SPEIER (for herself, Mr. SCHIFF, and Mr. KHANNA) submitted the fol-
lowing resolution; which was referred to the Committee on Energy and 
Commerce 
RESOLUTION 
Designating the week of July 17 through July 21, 2017, 
as ‘‘National Ectodermal Dysplasias Week’’ and sup-
porting the goals and ideals of National Ectodermal 
Dysplasias Week to raise awareness and understanding 
of ectodermal dysplasias. 
Whereas ectodermal dysplasias is a congenital disorder that 
causes defects to the skin, hair, nails, teeth, and glands 
of an individual and can also cause harm to other body 
parts of an individual, such as the eyes, ears, and throat; 
Whereas ectodermal dysplasias is a genetic disorder that is 
passed from parent to child; 
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Whereas a child may be the first individual in a family to be 
affected by ectodermal dysplasias and can then pass the 
condition on to the next generation; 
Whereas ectodermal dysplasias is a rare disorder that affects 
fewer than 200,000 people in the United States; 
Whereas symptoms of ectodermal dysplasias in an individual 
can include— 
(1) the inability to perspire; 
(2) lack of tears in the eyes; 
(3) cleft lip and palate; 
(4) sparse saliva; 
(5) missing fingers or toes; and 
(6) absence or malformation of some or all teeth, 
known as anodontia and hypodontia, respectively; 
Whereas there are more than 180 different types of ecto-
dermal dysplasias and a specific diagnosis depends on the 
combination of symptoms that an individual experiences; 
Whereas there is no cure for ectodermal dysplasias; 
Whereas the treatment for ectodermal dysplasias varies de-
pending on the severity of the disease, which can range 
from mild symptoms to extensive health issues that re-
quire advanced care; 
Whereas many types of ectodermal dysplasias affect the teeth 
and the nature of dental and oral symptoms— 
(1) are specific to each syndrome; and 
(2) can include severe hypodontia and anodontia 
that require complex care; 
Whereas 
an 
individual 
who 
suffers 
from 
ectodermal 
dysplasias can expect to spend approximately $150,000 
on dental care alone during the lifetime of the individual; 
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Whereas most insurance companies provide coverage for the 
treatment of a congenital disease or anomaly; 
Whereas most States require coverage for any repair or res-
toration of body parts for a congenital disease like ecto-
dermal dysplasias; 
Whereas coverage for complex and medically necessary dental 
procedures that are required because of ectodermal 
dysplasias, including prosthetic teeth and bone grafts, is 
routinely denied; 
Whereas access to health insurance coverage for medically 
necessary 
dental 
services 
relating 
to 
ectodermal 
dysplasias varies across the United States; 
Whereas gaps in ectodermal dysplasias coverage have serious 
consequences for patients and their families and may lead 
to severe limits on proper oral function and the ability to 
eat or speak; 
Whereas scientists across the United States are conducting 
research projects and clinical trials and are hopeful that 
breakthroughs in ectodermal dysplasias research and 
treatment are forthcoming; and 
Whereas the House of Representatives is an institution that 
can raise awareness about ectodermal dysplasias to the 
general public and the medical community: Now, there-
fore, be it 
Resolved, That the House of Representatives— 
(1) expresses support for the designation of 
‘‘National Ectodermal Dysplasias Week’’; 
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