PRINTER'S NO. 3337
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE RESOLUTION
No.
831
Session of
2018
INTRODUCED BY TOEPEL, LONGIETTI, BIZZARRO, R. BROWN, BURNS,
CALTAGIRONE, CORBIN, SCHLEGEL CULVER, DALEY, DiGIROLAMO,
DONATUCCI, DRISCOLL, DUSH, HAHN, PHILLIPS-HILL, JAMES,
KINSEY, MARSICO, McCLINTON, MILLARD, NEILSON, OBERLANDER,
PASHINSKI, PICKETT, READSHAW, RYAN, SCHLOSSBERG, SCHWEYER,
SONNEY, STAATS, TOOHIL, WARD, WARREN, WATSON AND GILLEN,
APRIL 16, 2018
INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35,
APRIL 16, 2018
A RESOLUTION
Designating June 19, 2018, as "Rare Disease Day" in
Pennsylvania.
WHEREAS, There are approximately 1.2 million Pennsylvanians
who suffer from rare diseases and there are approximately 7,000
rare diseases afflicting nearly 30 million people in the United
States; and
WHEREAS, Children with rare genetic diseases account for more
than half of the population affected by rare diseases in the
United States; and
WHEREAS, Many rare diseases are serious and life-threatening
and lack an effective treatment; and
WHEREAS, Rare diseases include epidermolysis bullosa,
progeria, sickle cell anemia, Tay-Sachs, cystic fibrosis, many
childhood cancers and fibrodysplasia ossificans progressiva; and
WHEREAS, Individuals with rare diseases experience challenges
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