News - NORD (National Organization for Rare Disorders)

November 21, 2022

TOPIC: Voices of Rare Cancer, Rare Cancer Coalition, Featured News

Highlights from #NORDSummit Session: Mental Health and Rare Cancers

Posted by Rohan Narayanan

One of the most popular sessions at NORD’s 2022 Rare Disease and Orphan Products Breakthrough Summit was the session, “Mental Health and Rare Cancers.” Attendees had the opportunity to gain insights as caregivers, patients, and advocates; leaders of nonprofit organizations could use the information shared to help them in their work supporting patients and families struggling with mental… Read More

Tags: Mental Health, 2022 Rare Disease and Orphan Products Breakthrough Summit, NORD 2022 Rare Disease and Orphan Products Breakthrough Summit, NORD Summit, Summit, rare cancer, #NORDSummit, rare cancer coalition

November 18, 2022

TOPIC: RDCA-DAP, Registries, Research

Request for Applications: New Patient Registries

Posted by Rohan Narayanan

The National Organization for Rare Disorders (NORD) announces a request for applications for the implementation of up to four new patient registries on the IAMRARE platform. Funding is made available through the Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP®), a collaborative agreement with the Critical Path Institute funded by the U.S. Food and Drug Administration.

The… Read More

Tags: research, IAMRARE, RFP, RDCA-DAP

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 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.

Tags: #ShowYourStripes, #LightUpForRare, Light Up for Rare, Rare Disease Day 2023, Rare Disease Day, eurordis, RDD, Show Your Stripes

November 15, 2022

TOPIC: Press Releases, Featured News, Advocacy

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

Posted 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

Tags: user fees, accelerated approval, user fee reauthorization, Orphan Products Grants program, Best Pharmaceuticals for Children program, FDA

November 1, 2022

TOPIC: Featured News, Events

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

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November 21, 2022

Highlights from #NORDSummit Session: Mental Health and Rare Cancers

Posted by Rohan Narayanan

November 18, 2022

Request for Applications: New Patient Registries

Posted by Rohan Narayanan

November 16, 2022

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

Posted 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

November 15, 2022

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

Posted by Rohan Narayanan

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

November 1, 2022

Highlights from the 2022 NORD Breakthrough Summit

Posted by Rohan Narayanan

FDA Commissioner Presents Keynote Address

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Alone we are rare. Together we are strong.®