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.

Bill: 118-hres-419
Sponsor: full_name: Rep. Ruppersberger, C. A. Dutch [D-MD-2]
Introduced: 2023-05-17
Policy area: Health
Subjects: Commemorative events and holidays

Congressional tributes

Health promotion and preventive care

Hereditary and development disorders

Medical research
Latest action: action_date: 2023-05-19
text: Referred to the Subcommittee on Health.

Summaries:
action_date: 2023-05-17
action_desc: Introduced in House
text: <p>This resolution supports the designation of Ehlers-Danlos Syndrome Awareness Month. This syndrome is a group of inherited disorders that affect collagen in skin, joints, and other connective tissue.</p>

tv_txt: IV 118th CONGRESS 1st Session H. RES. 419 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

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.