A RESOLUTION

 

1Designating February 28, 2013, as "Rare Disease Day" in
2Pennsylvania.

3WHEREAS, There are nearly 7,000 diseases and conditions
4considered rare, each affecting fewer than 200,000 Americans, in
5the United States; and

6WHEREAS, While each of these diseases may affect small
7numbers of people, rare diseases as a group affect almost 30
8million Americans; and

9WHEREAS, Many rare diseases are serious and debilitating
10conditions that have a significant impact on the lives of those
11affected; and

12WHEREAS, Of the nearly 7,000 rare diseases identified by the
13National Institutes of Health, only about 200 rare diseases have
14Food and Drug Administration-approved treatments; and

15WHEREAS, Individuals and families affected by rare diseases
16often experience problems such as a sense of isolation,

1difficulty in obtaining an accurate and timely diagnosis, few
2treatment options and problems related to accessing or being
3reimbursed for treatment; and

4WHEREAS, While some rare diseases, such as Lou Gehrig's
5disease and Huntington's disease, are relatively well known,
6many others are not known at all by the public, which leaves
7patients and their families to bear a large share of the burden
8for things such as raising funds for research; and

9WHEREAS, Thousands of Pennsylvanians are among those affected
10by rare diseases since nearly one in ten Americans have rare
11diseases; and

12WHEREAS, The National Organization for Rare Disorders is
13organizing a nationwide observance of "Rare Disease Day" on
14February 28, 2013, and patients, medical professionals,
15researchers, government officials and companies developing
16treatments for rare diseases are joining together to focus
17attention on rare diseases as a public health issue on that day;
18therefore be it

19RESOLVED, That the House of Representatives designate
20February 28, 2013, as "Rare Disease Day" in Pennsylvania.