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Archives for: March 25th, 2021

New Report Finds Medical Treatments for Rare Diseases Account for Only 11% of US Drug Spending; Nearly 80% of Orphan Products Treat Rare Diseases Exclusively

Written by Jennifer Huron on March 4, 2021

Washington, DC, March 4, 2021—As US policymakers consider options to address rising health care costs while still meeting the needs of patients, a new report from IQVIA has found that rare diseases account for just 11% of medical invoice spending in the United States, and 79% of all orphan… Read More

NORD Rare Action Network® 2018 State Report Card

Written by Lisa Sencen on March 20, 2018
Washington, DC, March 20, 2018—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders Rare Action Network® (NORD RAN). The 2018 “State Report Card”… Read More

State Report Card to Help People with Rare Diseases

Written by Jennifer Huron on December 13, 2016

rareactionnetworkWashington, D.C., December 13, 2016—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders… Read More

Thoughtful Biosimilars Policy Is Best Way to Ensure Optimum Patient Outcomes

Written by on June 4, 2014

Biologic therapies have been lifesaving and life changing for the patients we represent – more than 30 million Americans with more than 7,000 rare diseases. Literally, hundreds of thousands of rare disease patients have found their lives bettered by biologics and we are collectively grateful to the innovators and companies… Read More