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Archives for: February 4th, 2020

Gina and Gia’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 4, 2020

My daughter Gia was diagnosed at birth with the rare disease sickle cell. Gia has had 5 bouts with pneumonia, many stays in ICU, and nine blood transfusions. Sickle cell disease (SCD) is a genetic blood disorder that causes normal… Read More

Last Rare Disease Day Event of 2018 a Success in Pennsylania

Written by Laura Mullen on June 20, 2018

*The following article ran 6/19/2018 via Pennsylvania Legislative Services, an online legislative research, tracking, media, and analysis service providing access to Pennsylvania’s policy making process.

SUPPORTERS, LAWMAKERS CELEBRATE RARE DISEASE AWARENESS DAY

By Derek Snyder, Pennsylvania Legislative Services | June 19, 2018

Dozens of advocates joined… Read More