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.

IV 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, poten- tially 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; VerDate Sep 11 2014 03:25 May 18, 2023 Jkt 039200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6300 E:\BILLS\HR419.IH HR419 kjohnson on DSK79L0C42PROD with BILLS 2 •HRES 419 IH Whereas a network of Ehlers-Danlos Syndrome support groups can help connect those managing life with the dis- ease as well as better inform the health care community and the public; Whereas early and accurate diagnosis can provide the oppor- tunity 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 (1) supports the designation of Ehlers-Danlos 2 Syndrome Awareness Month; 3 (2) honors those bravely suffering from Ehlers- 4 Danlos Syndrome; and 5 (3) encourages scientific research and funding 6 to find a cure for Ehlers-Danlos Syndrome. 7 Æ VerDate Sep 11 2014 03:25 May 18, 2023 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6301 E:\BILLS\HR419.IH HR419 kjohnson on DSK79L0C42PROD with BILLS