SENATE RESOLUTION NO. 287

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 Senate of the State of Texas, 83rd Legislature, hereby recognize February 28, 2013, as Rare Disease Day and call on all Texans to learn more about this matter of serious concern.

Campbell

________________________________

President of the Senate

I hereby certify that the above Resolution was adopted by the Senate on February 25, 2013.

________________________________

Secretary of the Senate

________________________________

Member, Texas Senate