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August 3, 2022

TOPIC: Press Releases, Registries

All Things Kabuki and NORD® Launch Natural History Study of Kabuki Syndrome

Posted at August 8, 2022 08:30 am by Rohan Narayanan

Wasilla, Alaska, August 3, 2022All Things Kabuki and the National Organization for Rare Disorders, Inc. have launched a study with global reach to research Kabuki syndrome, which causes a variety of complications which may include mild to moderate intellectual impairment, growth delay, skeletal abnormalities, heart defects, hearing impairment, hypotonia, feeding and immune deficiencies. Kabuki syndrome currently has no… Read More

July 6, 2022

TOPIC: Press Releases

NORD Statement on Dobbs v. Jackson

Posted at July 7, 2022 09:09 am by Rohan Narayanan

Washington, DC, July 6, 2022 – NORD was founded in 1983 with the mission of improving the lives of people living with rare diseases by expanding their access to critical and timely diagnostics, services, treatments, and cures. The ability of our community to access the appropriate medical procedures and care they need, when they need it, is of the utmost importance… Read More

June 30, 2022

TOPIC: Press Releases

NORD’s Living Rare Forum and Rare Impact Awards Highlight Powerful Patient Stories and Community Rock Stars

Posted at June 6, 2022 09:58 am by Rohan Narayanan

NORD’s patient centric conference showcased inspiring individuals, expert resources and presentations, and a festive celebration at the Rock and Roll Hall of Fame

Cleveland, OH, June 29, 2022 – This week, the National Organization for Rare Disorders (NORD®) hosted the Living Rare, Living Stronger NORD Patient and Family Forum, NORD’s annual family focused conference. 300 enthusiastic attendees from across the… 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