To: President Donald Trump, The Pennsylvania State House, The Pennsylvania State Senate, Governor Tom Wolf, The United States House of Representatives, and The United States Senate

Save the Orphan Drug Tax Credit

The Orphan Drug Tax Credit is threatened. Representative Dave Camp, Chairman of the House Ways and Means Committee, has proposed the repeal of this critical incentive. The Orphan Drug Tax Credit, which allows drug manufacturers to claim a tax credit of up to 50% of certain research costs for orphan therapies, is a major incentive for orphan drug development within the Orphan Drug Act of 1983. Without this tax credit, millions of patients with a rare disease may never see a treatment.

Why is this important?

Our son passed away from a Rare Disease called Leigh's Disease. It is so important in the Rare Disease community that research continue so that some relief can come to those who suffer. And by claiming a tax credit of only 50% we may see drug manufacturers find orphan drugs to help treat patients with rare disease. Shortly after our son's death in 2010, EPI-743 went into clinical trials for those who were in final stages of Leigh's Disease. I'm sure that this would have never happened had it not been for the Orphan Drug Tax Credit!!!!