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Archives for: November 20th, 2017

Statement by 91 Patient Organizations in Opposition to the House of Representatives’ Repeal of the Orphan Drug Tax Credit

Written by Lisa Sencen on November 20, 2017

Washington, D.C., November 20, 2017 – “Last week, the House of Representatives voted to repeal the Orphan Drug Tax Credit (ODTC) as part of the Tax Reform and Jobs Act (H.R.1). Our organizations, which collectively represent millions of individuals with rare diseases, are disappointed and dismayed by this harmful repeal.

The… Read More

Musical Act Announced for Rare Impact Awards on May 18th

Written by Jennifer Huron on March 2, 2017

Washington, D.C., March 2, 2017—On Thursday, May 18, nationally touring musical artist Gaelynn Lea will perform at the Rare Impact Awards ceremony in Washington, D.C.  In 2016, Gaelynn Lea was named the winner of NPR Music’s second-ever Tiny Desk Contest. Her music video entry rose to the top of over… Read More