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Archives for: July 15th, 2021

NORD Named an Official Charity Partner of the 2021 TCS New York City Marathon

Written by Rohan Narayanan on July 15, 2021

Washington, DC – The National Organization for Rare Disorders® (NORD) was named an Official Charity Partner for the 2021 TCS New York City Marathon, taking place on November 7. This year serves as the 50th celebratory running of the marathon. NORD will be among the more than 400 official charity partners… Read More

NORD Welcomes Edward Neilan, MD, PhD, as Chief Medical and Scientific Officer

Written by Valaree DonFrancesco on May 27, 2021

Quincy, MA and Danbury, CT, May 27, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced the appointment of Edward Neilan, MD, PhD, to the new position of Chief Medical and Scientific Officer. Dr. Neilan, an internationally… Read More

NORD Joins with the Krabbe Disease Community to Publish “Voice of the Patient” Report

Written by Valaree DonFrancesco on March 16, 2021

Washington, DC, March 16, 2021—The National Organization for Rare Disorders (NORD)®, together with KrabbeConnect, The Legacy of Angels Foundation, Partners for Krabbe Research, Hunter’s Hope and with additional support from Gain Therapeutics, Magneta Therapeutics, PassageBio and Neurogene, has published the “Voice of the Patient” report sharing the stories of patients… Read More

NORD Releases Statement on Orphan Drug Assessment & Pricing Summit

Written by on May 31, 2017

Washington, D.C., May 31, 2017—NORD released the following statement in advance of today’s “Orphan Drug Assessment and Pricing Summit” held by the Institute for Clinical and Economic Review (ICER):

“We are pleased to participate in ICER’s ‘Orphan Drug Assessment and Pricing Summit’, and look forward to providing the… Read More