TITLE: Recognizing February 28, 2013, as Rare Disease Day.

SUMMARY: Recognizing February 28, 2013, as Rare Disease Day.

FULL TEXT:
WHEREAS, There are nearly 7,000 diseases and conditions that are considered rare by medical authorities in the United States, and each year, thousands of Texans are among those whose lives are changed by these diseases; and WHEREAS, A rare disease is defined as one that affects fewer than 200,000 people, but even though a specific disease may afflict only a small number of sufferers, as a group such conditions affect almost 30 million Americans, or nearly one in 10 people in our nation; and WHEREAS, Many rare diseases are serious and debilitating, with a significant impact on the lives of those affected and their families, and more than 15 million Americans have a disease for which there is no specific treatment; and WHEREAS, Individuals and families who face a rare disease often experience a sense of isolation, difficulty in getting an accurate and timely diagnosis, few treatment options, and problems in receiving reimbursement for treatment; moreover, those who are diagnosed with a lesser known disorder often find that they must bear the lion's share of the responsibility for raising awareness as well as for raising funds for research toward a possible treatment or cure; and WHEREAS, The National Organization for Rare Disorders (NORD) is sponsoring a nationwide observance of Rare Disease Day, when patients, medical professionals, researchers, government officials, and companies developing treatments can join together to focus attention on rare diseases as a public health issue; now, therefore, be it RESOLVED, That the House of Representatives of the 83rd Texas Legislature hereby recognize February 28, 2013, as Rare Disease Day and call on all Texans to learn more about this matter of serious concern. Naishtat Straus M. Gonzalez of El Paso Oliveira Allen N. Gonzalez of El Paso Orr Alonzo Gooden Otto Alvarado Guerra Paddie Anchia Guillen Parker Anderson Gutierrez Patrick Ashby Harless Perez Aycock Harper-Brown Perry Bell Hernandez Luna Phillips Bohac Herrero Pickett Bonnen of Brazoria Hilderbran Pitts Bonnen of Galveston Howard Price Branch Huberty Raney Burkett Hughes Ratliff Burnam Hunter Raymond Button Isaac Reynolds Callegari Johnson Riddle Canales Kacal Ritter Capriglione Keffer Rodriguez of Bexar Carter King of Hemphill Rodriguez of Travis Clardy King of Parker Rose Coleman King of Taylor Sanford Collier King of Zavala Schaefer Cook Kleinschmidt Sheets Cortez Klick Sheffield of Bell Craddick Kolkhorst Sheffield of Coryell Creighton Krause Simmons Crownover Kuempel Simpson Dale Larson Smith Darby Laubenberg Smithee Davis of Dallas Lavender Springer J. Davis of Harris Leach Stephenson S. Davis of Harris Lewis Stickland Deshotel Longoria Strama Dukes Lozano Taylor Dutton Lucio III Thompson of Brazoria Eiland Marquez Thompson of Harris Elkins Martinez Toth Fallon Martinez Fischer Turner of Collin Farias McClendon Turner of Harris Farney Menendez Turner of Tarrant Farrar Miles Villalba Fletcher Miller of Comal Villarreal Flynn Miller of Fort Bend Vo Frank Moody Walle Frullo Morrison White Geren Munoz, Jr. Workman Giddings Murphy Wu Goldman Naishtat Zedler Gonzales Nevarez Zerwas Speaker of the House I certify that H.R. No. 586 was adopted by the House on February 27, 2013, by a non-record vote. Chief Clerk of the House