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LRG Receives COVID-19 Rapid Response Seed Grants from NORD

The National Organization for Rare Diseases (NORD) has awarded 19 seed grants to non-profit organizations that have been adversely affected by the COVID-19 pandemic. The pandemic has created a financial crisis for non-profits due to the cancellation of large events, particularly fundraisers upon which these organizations depend.

By |2020-07-30T10:00:54-04:00July 24th, 2020|News|

NORD Hosts Rare Disease Summit

The National Organization for Rare Disorders (NORD) held a Rare Disease Summit in Washington, D.C. October 20019, hosting several thousand people comprised of patients, advocates, non-profit employees, health providers, IT developers, pharmaceutical staff, physicians and researchers, and representatives from government entities.

By |2019-12-18T11:06:15-05:00December 18th, 2019|Advocacy, Conferences, News, Newsletter|

Encouraging Rare Disease Connections at the NORD Conference

The National Organization for Rare Diseases (NORD) held its 2015 Breakthrough Summit October 21-22 in Arlington, Virginia. This year’s event convened top leaders from the FDA, NIH, Industry, Patient Groups, Payers and Research Institutions to [...]

By |2018-10-30T11:39:34-04:00December 16th, 2015|Advocacy, Newsletter|

National Organization for Rare Disorders Hosts Forum for FDA Commissioner and Patient Leaders

Food and Drug Commissioner Dr. Margaret Hamburg today conducted an unusual one-on-one dialogue with leaders of approximately 60 patient organizations at a forum hosted by the National Organization for Rare Disorders (NORD).

By |2019-12-26T14:30:48-05:00February 1st, 2011|News|
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