Published August 18, 2022 by NORD
NORD’s annual rare disease conference on October 17 and 18 in Washington, DC will showcase two days of insightful speakers, discussions, and in-person connection WASHINGTON, DC, August 18, 2022 – The …
Read morePublished August 12, 2022 by NORD
Washington, DC, August 12, 2022 – Following the passage of the Inflation Reduction Act, Peter L. Saltonstall, President and CEO, the National Organization for Rare Disorders (NORD), issued the following …
Continue reading “NORD Statement on Passage of the Inflation Reduction Act”
Read morePublished July 19, 2022 by NORD
On Tuesday, July 19, join rare disease advocates and coalition partners across the nation for a social media day of action to urge Congress to pass the Safe Step Act …
Read morePublished July 12, 2022 by NORD
Many people with rare diseases require medical nutrition prescribed by a healthcare provider to prevent permanent disability and mortality, allow for normal growth in children and adults, or provide adequate …
Read morePublished July 7, 2022 by NORD
Explore the five steps in drug development and discover new opportunities to get involved More than 95% of rare disease patients lack an FDA-approved treatment for their condition. However, today …
Continue reading “A Conversation on Drug Development for Rare Diseases”
Read morePublished June 16, 2022 by NORD
The current baby formula shortage has rocked the lives of American families, as parents and caregivers across the country struggle to find the formula they need to feed their children. …
Read morePublished June 9, 2022 by NORD
New RDAC will help educate the public, medical professionals, and government officials about rare diseases and identify solutions to improves the lives of those living with rare diseases June 9, …
Continue reading “Colorado Becomes 24th State to Establish a Rare Disease Advisory Council”
Read morePublished June 9, 2022 by NORD
WASHINGTON, June 8, 2022—Today, the U.S. House of Representatives passed by a vote of 392-28 the Food and Drug Amendments of 2022 (H.R. 7667), legislation with significant implications for millions …
Continue reading “NORD Applauds House Passage of H.R. 7667, the Food and Drug Amendments of 2022”
Read morePublished May 24, 2022 by NORD
May 24, Hartford, CT – Yesterday, Governor Ned Lamont signed House Bill 5500 (HB 5500) into law which includes provisions to establish a permanent Rare Disease Advisory Council (RDAC) in the …
Continue reading “Connecticut Establishes a Permanent Rare Disease Advisory Council”
Read morePublished 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”
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