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June 16, 2022

TOPIC: Advocacy, Get Involved

Baby Formula Shortage Highlights Need for Congress to Act on Medical Nutrition Equity

Posted at June 6, 2022 09:17 am by Rohan Narayanan

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. Media coverage has highlighted the stories of desperate parents driving hours from their homes to find formula or being forced to pay double or triple the usual cost… Read More

June 9, 2022

TOPIC: Press Releases, Advocacy, RDACs

Colorado Becomes 24th State to Establish a Rare Disease Advisory Council

Posted at June 6, 2022 03:07 pm by Rohan Narayanan

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, 2022, Denver, CO – Today, Governor Jared Polis signed Senate Bill 186 (SB 186) into law to create a Rare Disease Advisory Council (RDAC), making Colorado the 10th state to… Read More

June 8, 2022

TOPIC: Press Releases, Advocacy

NORD Applauds House Passage of H.R. 7667, the Food and Drug Amendments of 2022

Posted at June 6, 2022 09:00 pm by Rohan Narayanan

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 of Americans living with rare diseases. The bipartisan bill is an important step forward in reauthorizing the FDA’s medical product user fee programs, helps strengthen the accelerated approval pathway,… Read More

May 24, 2022

TOPIC: Uncategorized, Press Releases, Featured News, Advocacy, RDACs

Connecticut Establishes a Permanent Rare Disease Advisory Council

Posted at May 5, 2022 04:07 pm by Valaree DonFrancesco

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 state of Connecticut. Connecticut established a temporary rare disease task force in 2017 that concluded its work in 2019, but the Rare Disease Advisory Council created as part of HB… Read More

May 11, 2022

TOPIC: Press Releases, Advocacy

NORD Applauds Congressional Efforts to Restore Intent of the Orphan Drug Act

Posted at May 5, 2022 04:42 pm by Rohan Narayanan

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 to foster robust rare disease drug development. Last week, leaders of the House Energy and Commerce Committee included language in their bipartisan Food and Drug Amendments… Read More