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Apr. 25, 2022

TOPIC: Press Releases, Advocacy

NORD Pays Tribute to Life and Service of Senator Orrin Hatch

Posted by Rohan Narayanan

April 25, 2022, Washington DC—-The National Organization for Rare Disorders (NORD) today issued a statement of tribute to the life and service of the late Senator Orrin Hatch (R-UT), who passed away over the weekend.   

“Over his many years in Congress, Senator Hatch demonstrated his commitment to public health and his concern for the millions of Americans affected by rare diseases through his leadership on numerous issues,” said Peter L. Saltonstall, President and CEO, NORD. “This includes the key role he played in shepherding the Orphan Drug Act through the Senate in the early 1980s to encourage development of treatments for rare diseases. He recognized, at a time when few others did, the crisis for individuals with rare diseases who had no hope of a treatment or cure.”   

In grateful appreciation of Senator Hatch’s support for the 30 million Americans affected by rare diseases, NORD honored him in 1987 and again in 2016 with its National Health Leadership Award.  

In addition to Senator Hatch’s leadership on the Orphan Drug Act, his many important contributions over the years to public health and support for those with rare diseases have included:  

  • In 2000, Senator Hatch and Senator Ted Kennedy introduced the Rare Diseases Act, for which NORD advocated in support of, to enhance federal funding for rare disease research and accelerate the development of treatments. The legislation ultimately was split into two bills – the Rare Diseases Act and the Orphan Products Development Act.  
  • In 2002, the Rare Diseases Act was signed into law to codify the NIH Office of Rare Diseases Research and provide for the establishment of the NIH Rare Diseases Clinical Research Network with $55 million in funding for rare disease research.  
  • In 2015, Senator Hatch was named co-chair of the Rare Disease Congressional Caucus.  
  • In 2016, he was a co-sponsor of the OPEN Act, legislation that was introduced to provide incentives for companies to “repurpose” previously approved drugs for the treatment of rare diseases. 

To learn more about NORD’s policy work, visit: 

About the National Organization for Rare Disorders (NORD) 

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit