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Archives for: May 29th, 2018

NORD Launches RareInsights, New Initiative to Support Data-Driven Advocacy, and Presents 5 Myths About Orphan Drugs and the Orphan Drug Act

Written by Laura Mullen on May 29, 2018

Washington, D.C., May 30, 2018—The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families, and kicked off the program with the  infographic 5… Read More

Together, we can be stronger for those that need us.

Written by Christina Jensen on December 14, 2017
Dear Rare Disease Community Member,
Wow! What an exciting time to be involved with rare diseases. Never before has there been so much progress in diagnosing rare diseases and in the availability of new treatments! 2017 promises to be another record year in terms of new therapies becoming available for patients with rare… Read More

Statement by 91 Patient Organizations in Opposition to the House of Representatives’ Repeal of the Orphan Drug Tax Credit

Written by Christina Jensen on November 20, 2017

Washington, D.C., November 20, 2017 – “Last week, the House of Representatives voted to repeal the Orphan Drug Tax Credit (ODTC) as part of the Tax Reform and Jobs Act (H.R.1). Our organizations, which collectively represent millions of individuals with rare diseases, are disappointed and dismayed by this harmful repeal.

The… Read More

Statement by 36 Patient Organizations in Opposition to Senate’s Proposed Weakening of the Orphan Drug Tax Credit

Written by Christina Jensen on November 14, 2017

Washington, D.C., November 14, 2017 – “Today, the Senate Finance Committee continues its consideration of the Tax Cuts and Jobs Act. Our organizations, which collectively represent millions of individuals with rare diseases, stand united in opposition to the Senate Finance Committee’s proposal to substantially weaken the Orphan Drug… Read More