News from national organization for rare disorders (nord) A wide array of domestic and global news stories; news topics include politics/government, business, technology, religion, sports/entertainment, science/nature, and health/lifestyle.

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Feb 27, 2023, 14:39 ET National Organization of Rare Disorders (NORD) Announces 2023 Rare Impact Award Honorees

National Organization for Rare Disorders (NORD®) Founder and past President Abbey S. Meyers, PhD, former U.S. Rep. Jaime Herrera Beutler of...

Feb 23, 2023, 16:49 ET NATIONAL EXPERTS AVAILABLE FOR RARE DISEASE DAY: FEBRUARY 28, 2023

WHAT & WHEN: February 28th marks Rare Disease Day – a day designated to driving awareness and change for the more than 25 million Americans and 300...

Feb 07, 2023, 10:14 ET NORD's State Report Card Shows Progress for Rare Disease Patients, Highlights Remaining Barriers

The National Organization for Rare Disorders (NORD®) today published the latest edition of its annual State Report Card, which for the past eight...

Nov 16, 2022, 13:00 ET Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2023

On February 28, 2023, the rare disease community worldwide will celebrate Rare Disease Day. Now more than ever, it is important to highlight the...

Nov 15, 2022, 11:56 ET Maybe Obscure to You, but Life-Changing for Millions of Americans

In a letter authored by NORD and signed by 126 organizations representing or treating patients impacted by rare diseases, advocates call on...

Oct 13, 2022, 17:38 ET RDDC and NORD Announce New Partnership to Help Identify Barriers for Rare Disease Patients and their Caregivers

Today, the Rare Disease Diversity Coalition (RDDC), the nation's leading voice for alleviating the disproportionate burden of rare diseases on...

Sep 30, 2022, 14:04 ET NORD Statement on User Fee Reauthorization and Continuing Resolution

Following the passage of H.R 6833, Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), issued the...

Sep 28, 2022, 08:30 ET Rare Cancer Day 2022 Showcases Critical Community Awareness and Advocacy

This week, the rare disease community will celebrate the fourth annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders...

Sep 15, 2022, 14:27 ET Rare Disease Workshop Highlights the Importance of Data Sharing in Drug Development

The Rare Disease Cures Accelerator-Data and Analytics Platform initiative (RDCA-DAP®) hosted an all-day workshop and annual meeting September 13 and...

Aug 25, 2022, 10:13 ET Upcoming Rare Disease Workshop Focuses on the Importance of Data Sharing in Drug Development

The Rare Disease Cures Accelerator-Data and Analytics Platform initiative (RDCA-DAP®) will host its in-person annual workshop on September 13 and 14...

Aug 18, 2022, 11:03 ET NORD Breakthrough Summit 2022: Highly Anticipated Rare Disease Conference Announces Keynote Speakers, Session Topics

The NORD® Rare Diseases & Orphan Products Breakthrough Summit® – the most highly anticipated, global rare disease conference of the year, every year...

Aug 12, 2022, 19:48 ET NORD Statement on Passage of the Inflation Reduction Act

Following the passage of the Inflation Reduction Act, Peter L. Saltonstall, President and CEO, the National Organization for Rare Disorders (NORD),...

Jun 30, 2022, 10:30 ET NORD's Living Rare Forum and Rare Impact Awards Highlight Powerful Patient Stories and Community Rock Stars

This week, the National Organization for Rare Disorders (NORD®) hosted the Living Rare, Living Stronger NORD Patient and Family Forum, NORD's annual...

Jun 09, 2022, 15:48 ET Colorado Becomes 24th State to Establish a Rare Disease Advisory Council

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 ...

May 24, 2022, 17:16 ET Connecticut Establishes a Permanent Rare Disease Advisory Council

Yesterday, Governor Ned Lamont signed House Bill 5500 (HB 5500) into law which includes provisions to establish a permanent Rare Disease Advisory...

May 11, 2022, 20:29 ET NORD Applauds Legislative Efforts to Restore Intent of the Orphan Drug Act

The National Organization for Rare Disorders (NORD) applauds efforts of Congressional leaders to protect the Orphan Drug Act (ODA) and ensure proper...

May 10, 2022, 08:24 ET Maine Elevates Rare Disease Voices, Establishes State Advisory Council

Today, Maine's rare disease community celebrated the passage of Legislative Document 972 (LD 972), which officially establishes a Rare Disease...

May 06, 2022, 13:00 ET Georgia Becomes 22nd State to Establish a Rare Disease Advisory Council

This week, Governor Brian Kemp signed legislation into law to establish a Rare Disease Advisory Council (RDAC) in Georgia. This advisory body will be ...

Apr 29, 2022, 14:15 ET NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research

Today, the National Organization for Rare Disorders (NORD®) announced three new requests for proposal (RFP) for grant funding related to the...

Apr 08, 2022, 10:30 ET ICYMI: Rare Disease Community Takes Action to Strengthen and Reform Accelerated Approval

This week, the National Organization for Rare Disorders (NORD), along with 90 other patient organizations sent letters to Health and Human Services...

Mar 03, 2022, 12:11 ET Navigating Diversity, Equity and Inclusion in Rare Disease Nonprofits

Today, the National Organization for Rare Disorders (NORD), the leading rare disease advocacy organization, released a dynamic new resource to...

Feb 28, 2022, 08:57 ET The Most Important Holiday Most Don't Know: Celebrating Rare Disease Day

Today is Rare Disease Day, a global celebration to raise awareness among the public and decision-makers about the challenges faced by the over 25...

Feb 22, 2022, 08:20 ET A Rare Report Card: NORD Grades All 50 States on Rare Disease Policy Issues

Today, the National Organization for Rare Disorders (NORD®) published the latest edition of its annual State Report Card, which rates all 50 states...

Feb 17, 2022, 08:35 ET Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2022

Leading up to Rare Disease Day on Monday, February 28, the National Organization for Rare Disorders (NORD) is highlighting the partners and...

Jan 20, 2022, 09:05 ET NORD's RareLaunch Program Announces Expanded Course Learning to Help Launch and Grow Rare Disease Nonprofits

Today, the National Organization for Rare Disorders (NORD®) announced enhanced learning and updated courses now available through its innovative...