118 HRES 419 IH: 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. U.S. House of Representatives 2023-05-17 text/xml EN Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain.

IV118th CONGRESS1st SessionH. RES. 419IN THE HOUSE OF REPRESENTATIVESMay 17, 2023Mr. Ruppersberger submitted the following resolution; which was referred to the Committee on Energy and CommerceRESOLUTIONExpressing 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; andWhereas the month of May would be an appropriate month to designate as Ehlers-Danlos Syndrome Awareness Month: Now, therefore, be it

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.