News - Page 2 of 176 - NORD (National Organization for Rare Disorders)

November 1, 2022

Highlights from the 2022 NORD Breakthrough Summit

Posted by Rohan Narayanan

Last month, more than 830 enthusiastic attendees gathered in-person (and many more virtually) for the 2022 NORD Rare Diseases and Orphan Products Breakthrough Summit to address and take action on the opportunities and challenges facing the rare disease community. Here are a few highlights:

FDA Commissioner Presents Keynote Address

FDA Commissioner Robert Califf, MD, underscored the critically important role played by… Read More

Tags: Mental Health, NORD Summit, rare cancer, Dr. Robert Califf, Robert Califf, CDRH, CBER, DEI, caregiver, FDA, Patient, NIH, 2022 NORD Rare Diseases and Orphan Products Breakthrough Summit, CDER

October 28, 2022

TOPIC: Uncategorized

Strong Like Sebastian: Kara’s Journey as a Rare Caregiver

Posted by Julie Ostroff

My 11-year-old son Sebastian is an amazing boy who possesses incredible strength and makes me smile every day. He is a sweet, friendly, and caring boy, who wants to have lots of friends, play sports, and do what every other child can do. However, unlike most children, Sebastian faces the daily challenges that come with suffering from progressive… 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 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

Tags: RDDC, Survey, underrepresented populations, research, Rare Disease Diversity Coalition, DEI, Black Women’s Health Imperative, equity, Data, barriers, Diversity, inclusion, marginalized

October 6, 2022

TOPIC: Featured News, Get Involved

Help for rare disease patients impacted by recent 2022 hurricanes

Posted 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

September 30, 2022

TOPIC: Press Releases, Advocacy

NORD Statement on User Fee Reauthorization and Continuing Resolution

Posted 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 30^th deadline. Every five years, Congress is tasked… Read More

Tags: federal government, CR, user fee, Congress, user fee package, FDA, Senate, House, US Food and Drug Administration, user fee reauthorization, UFA, Continuing Resolution

November 1, 2022

Highlights from the 2022 NORD Breakthrough Summit

Posted by Rohan Narayanan

FDA Commissioner Presents Keynote Address

October 28, 2022

Strong Like Sebastian: Kara’s Journey as a Rare Caregiver

Posted by Julie Ostroff

October 13, 2022

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

Posted 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

October 6, 2022

Help for rare disease patients impacted by recent 2022 hurricanes

Posted by Julie Ostroff

September 30, 2022

NORD Statement on User Fee Reauthorization and Continuing Resolution

Posted by Rohan Narayanan

Topics

Alone we are rare. Together we are strong.®