Published May 11, 2022 by NORD
Washington, DC — The National Organization for Rare Disorders (NORD) applauds efforts of Congressional leaders to protect the Orphan Drug Act (ODA) and ensure proper incentives are in place to …
Continue reading “NORD Applauds Congressional Efforts to Restore Intent of the Orphan Drug Act”
Read morePublished May 6, 2022 by NORD
New council will help educate medical professionals, government agencies, legislators, and the public about rare diseases, research and treatment May 6, 2022, Atlanta, GA – This week, Governor Brian Kemp …
Continue reading “Georgia Becomes 22nd State to Establish a Rare Disease Advisory Council”
Read morePublished April 25, 2022 by NORD
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 …
Continue reading “NORD Pays Tribute to Life and Service of Senator Orrin Hatch”
Read morePublished April 8, 2022 by NORD
90 Patient Organizations Sign-on to NORD Letters to Secretary Becerra and Congressional Leaders on Strengthening the Accelerated Approval Pathway April 8, 2022, Washington, DC – This week, the National Organization …
Read morePublished February 25, 2022 by NORD
Send a message to your representatives NOW telling them to support access to vital telehealth services. Recognizing how important access to telehealth services has been to millions of Americans during …
Read morePublished February 22, 2022 by NORD
NORD’s State Report Card Provides Critical Analysis Across Nine Policy Areas, Including Telehealth, Drug Costs, Medicaid Eligibility, and More February 22, 2022, Washington, DC – Today, the National Organization for …
Continue reading “A Rare Report Card: NORD Grades All 50 States on Rare Disease Policy Issues”
Read morePublished February 17, 2022 by NORD
Organizations and individuals from across the country are partnering with NORD to help make a difference for rare disease patients and families on Rare Disease Day 2022 February 17, 2022, …
Read morePublished February 15, 2022 by NORD
Rare disease community eager to continue important partnership with FDA February 15, Washington, DC – Today, the National Organization for Rare Disorders (NORD) President and CEO Peter Saltonstall issued the …
Read morePublished February 9, 2022 by NORD
Request for Proposal (RFP) Copy and design for NORD’s 2021 Annual Report BACKGROUND The National Organization for Rare Disorders® (NORD), a 501(c)(3) organization, is a patient advocacy organization dedicated to …
Continue reading “Request for Proposal: NORD’s 2021 Annual Report”
Read morePublished February 3, 2022 by NORD
Members of the rare disease community go through many challenging issues regarding health equity, the diagnostic odyssey, access and affordability to proper treatments, and more. The National Organization for Rare …
Continue reading “NORD Gives Back: Advocacy and Action”
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