|Posted:||April 13, 2017 11:35 AM|
|From:||Representative Marcy Toepel and Rep. Mark Longietti|
|To:||All House members|
|Subject:||Rare Disease Day in Pennsylvania - May 24, 2017|
|On March 14, 2017 we had to cancel our scheduled Rare Disease Day in Pennsylvania due to a snow storm. Therefore, Rare Disease Day has been rescheduled to May 24, 2017.
In the near future, we plan to introduce a new House Resolution to designate May 24, 2017 as “Rare Disease Day” in Pennsylvania (redraft of HR 55).
According to the National Institutes of Health (NIH), nearly 30 million Americans have rare diseases. A disease is considered rare if it affects fewer than 200,000 Americans. There are nearly 7,000 such diseases according to NIH. They tend to be serious and/or lifelong, and approximately two-thirds of those affected are children.
We invite you to join us in cosponsoring this resolution. Listed below for your convenience is the name of those who cosponsored the prior resolution.
TOEPEL, LONGIETTI, READSHAW, BAKER, V. BROWN, CALTAGIRONE, CORBIN, DiGIROLAMO, DUSH, FREEMAN, GABLER, GODSHALL, HENNESSEY, PHILLIPS-HILL, KINSEY, KORTZ, MACKENZIE, MARSICO, MILLARD, MURT, NEILSON, O'BRIEN, ROZZI, RYAN, SONNEY, TOOHIL, WARD, BIZZARRO and GILLEN
Introduced as HR294