IV 

115TH CONGRESS 

1ST SESSION H. RES. 464 

Designating the week of July 17 through July 21, 2017, as ‘‘National Ectodermal 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 following 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 supporting 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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•HRES 464 IH 

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 ectodermal 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 depending on the severity of the disease, which can range 

from mild symptoms to extensive health issues that require 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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•HRES 464 IH 

Whereas most insurance companies provide coverage for the 

treatment of a congenital disease or anomaly; 

Whereas most States require coverage for any repair or restoration of body parts for a congenital disease like ectodermal 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, therefore, be it 

1 Resolved, That the House of Representatives— 

2 (1) expresses support for the designation of 

3 ‘‘National Ectodermal Dysplasias Week’’; 


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•HRES 464 IH 

1 (2) supports the goals and ideals of National 

2 Ectodermal Dysplasias Week to raise awareness and 

3 understanding of ectodermal dysplasias; 

4 (3) encourages the people of the United States 

5 to become more informed about— 

6 (A) ectodermal dysplasias; and 

7 (B) the role of comprehensive treatment 

8 for all symptoms of ectodermal dysplasias, in9 cluding dental manifestations, in improving 

10 quality of life; and 

11 (4) respectfully requests that the Secretary of 

12 the House of Representatives transmit an enrolled 

13 copy of this resolution to the National Foundation 

14 for Ectodermal Dysplasias, a nonprofit organization 

15 dedicated to improving the lives of individuals af16 fected by ectodermal dysplasias. 

Æ 


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