Expressing support for the designation of May as Ehlers-Danlos Syndrome Awareness Month to increase the knowledge of this little-known, potentially fatal, genetic disease.

[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 419 Introduced in House (IH)]

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118th CONGRESS
  1st Session
H. RES. 419

Expressing support for the designation of May as Ehlers-Danlos Syndrome 
    Awareness Month to increase the knowledge of this little-known, 
                  potentially fatal, genetic disease.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                              May 17, 2023

    Mr. Ruppersberger submitted the following resolution; which was 
            referred to the Committee on Energy and Commerce

_______________________________________________________________________

                               RESOLUTION


 
Expressing support for the designation of May as Ehlers-Danlos Syndrome 
    Awareness Month to increase the knowledge of this little-known, 
                  potentially fatal, genetic disease.

Whereas Ehlers-Danlos Syndrome represents multiple genetic disorders involving 
        mutations in connective tissue that are characterized by looseness, 
        instability, and dislocation of the joints and fragile skin that easily 
        bruises and scars;
Whereas there are 13 types of Ehlers-Danlos Syndrome caused by genetic defects 
        in collagen, one of the major structural components of the body;
Whereas it is estimated that the prevalence of all types of the syndrome affect 
        at least 1 in 5,000 people worldwide;
Whereas a network of Ehlers-Danlos Syndrome support groups can help connect 
        those managing life with the disease as well as better inform the health 
        care community and the public;
Whereas early and accurate diagnosis can provide the opportunity to create 
        lifesaving medical plans and ensure the quality of life;
Whereas there is currently no treatment for Ehlers-Danlos Syndrome and no known 
        cure;
Whereas further medical research and awareness bring hope for treatment and a 
        cure; and
Whereas the month of May would be an appropriate month to designate as Ehlers-
        Danlos Syndrome Awareness Month: Now, therefore, be it
    Resolved, That the House of Representatives--
            (1) supports the designation of Ehlers-Danlos Syndrome 
        Awareness Month;
            (2) honors those bravely suffering from Ehlers-Danlos 
        Syndrome; and
            (3) encourages scientific research and funding to find a 
        cure for Ehlers-Danlos Syndrome.
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