[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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