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November 16, 2022

TOPIC: Rare Disease Day, Press Releases, Featured News

Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2023

Posted at November 11, 2022 09:45 am by Rohan Narayanan

With 100 days till Rare Disease Day 2023, organizations and individuals across the country join the National Organization for Rare Disorders (NORD) to help make a difference for rare disease patients and families 

QUINCY, MA, November 16, 2022 — On February 28, 2023, the rare disease community worldwide will celebrate Rare Disease Day. 

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November 15, 2022

TOPIC: Press Releases, Featured News, Advocacy

Maybe Obscure to You, but Life-Changing for Millions of Americans

Posted at November 11, 2022 10:19 am by Rohan Narayanan

126 Organizations Urge Congress to Include Critical FDA Programs and Reforms in Year-End Spending Bill

In a letter authored by NORD and signed by 126 organizations representing or treating patients impacted by rare diseases, advocates call on congressional leaders to stand up for the more than 25 million Americans living with rare diseases by including rare disease patient priorities… Read More

October 13, 2022

TOPIC: Press Releases, Partnerships, Research

RDDC and NORD Announce New Partnership to Help Identify Barriers for Rare Disease Patients and their Caregivers

Posted at October 10, 2022 03:55 pm by Rohan Narayanan

New initiative seeks to identify gaps experienced by patients and caregivers in underrepresented communities along their rare disease diagnosis and treatment journey

Washington, DC, October 13, 2022— Today, the Rare Disease Diversity Coalition (RDDC), the nation’s leading voice for alleviating the disproportionate burden of rare diseases on communities of color, and the National Organization for Rare Disorders (NORD), the leading… Read More

October 6, 2022

TOPIC: Featured News, Get Involved

Help for rare disease patients impacted by recent 2022 hurricanes

Posted at October 10, 2022 02:44 pm by Julie Ostroff

NORD’s Hurricane Emergency Relief Fund provides limited financial assistance to those with a rare disease who are victims of natural disasters.

Emergency relief funds may be requested once per household/per lifetime for up to $1,000.

Expenses that may be covered under this award:

  • Unexpected utility costs, such as those caused by severe weather
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September 30, 2022

TOPIC: Press Releases, Advocacy

NORD Statement on User Fee Reauthorization and Continuing Resolution

Posted at September 9, 2022 01:06 pm by Rohan Narayanan

September 30, 2022, Washington, DC – Following the passage of H.R 6833, Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), issued the following statement:

“NORD is pleased that Congress approved a full five-year reauthorization of several critical FDA user fee programs prior to the September 30th deadline. Every five years, Congress is tasked… Read More