Title: 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.
Policy area: Health

Summary:
Expresses support for the designation of National Ectodermal Dysplasias Week. (Ectodermal dysplasias are a group of genetic conditions that commonly affect the hair, nails, teeth, and sweat glands.)
Encourages Americans to become more informed about ectodermal dysplasias and the role of treatment in improving quality of life.

[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 464 Introduced in House (IH)]

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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;
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;
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
    Resolved, That the House of Representatives--
            (1) expresses support for the designation of ``National 
        Ectodermal Dysplasias Week'';
            (2) supports the goals and ideals of National Ectodermal 
        Dysplasias Week to raise awareness and understanding of 
        ectodermal dysplasias;
            (3) encourages the people of the United States to become 
        more informed about--
                    (A) ectodermal dysplasias; and
                    (B) the role of comprehensive treatment for all 
                symptoms of ectodermal dysplasias, including dental 
                manifestations, in improving quality of life; and
            (4) respectfully requests that the Secretary of the House 
        of Representatives transmit an enrolled copy of this resolution 
        to the National Foundation for Ectodermal Dysplasias, a 
        nonprofit organization dedicated to improving the lives of 
        individuals affected by ectodermal dysplasias.
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