NORD Issues Statement in Response to Senator Orrin Hatch’s Announced Retirement

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Washington, D.C. – January 4, 2018 – As we celebrate the 35th anniversary of the Orphan Drug Act, we are particularly grateful for the champions responsible for its creation. Today, such gratitude is particularly significant, as one champion, Senator Orrin Hatch, announced this week his intention to retire at the end of 2018. Over his 40 years in the United States Senate, Senator Orrin Hatch has exhibited incredible dedication, leadership, and compassion for the rare disease community. We will miss him greatly.

Senator Hatch changed the course of history for the 30 million Americans with rare diseases when he shepherded the monumental Orphan Drug Act through the Senate in 1983.  He recognized, at a time when few others did, the crisis for individuals with rare diseases without a hope for a treatment or cure. 35 years later, we now have over 600 treatments for rare diseases. Furthermore, 2017 set the record for the greatest number of orphan therapies approved by the Food and Drug Administration (FDA) in a single year.

Senator Hatch also championed the Rare Diseases Act of 2002. Partnering with Senator Ted Kennedy, Senator Hatch ensured that this critical piece of legislation for the research of rare diseases was passed and signed into law.

More recently, the Senator has championed the OPEN Act, ensured the enactment of the Newborn Screening Saves Lives Reauthorization Act, enabled the streamlined development and review of orphan therapies in the 21st Century Cures Act, and just last month helped save the Orphan Drug Tax Credit from repeal.

All of us at NORD cherish Senator Hatch’s commitment to the rare disease community. We will always be grateful for his efforts to better the health and wellbeing of some of our nation’s most vulnerable patients.

View video of Senator Hatch accepting a 2016 NORD Rare Impact Award.

Media Contact:
Laura Mullen
(203) 744-0100 ext. 258