Press Releases Archives - NORD (National Organization for Rare Disorders)

September 16, 2020

TOPIC: Press Releases, Featured News, Patients & Members, Advocacy

Rare Cancer Day 2020 To Take Place on September 30

Posted at September 9, 2020 09:54 am by Laura Mullen

Washington, DC, September 16, 2020–The National Organization for Rare Disorders (NORD®) has announced the second annual Rare Cancer Day, taking place September 30, 2020. Spearheaded by the NORD Rare Cancer Coalition, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed to bring attention to the… Read More

Tags: TargetCancer Foundation, Fibrolamellar Cancer Foundation, rare cancer coalition, #RareCancerDay, Voices of Rare Cancer, genomic testing, rare cancer patient stories

September 10, 2020

TOPIC: Press Releases, Featured News, Patients & Members, Research, Advocacy, Industry

2020 NORD Summit to Feature Leading Experts in Public Policy, Patient Advocacy, Rare Disease Research and Regulatory Science

Posted at September 9, 2020 10:29 am by Laura Mullen

Washington, DC, September 10, 2020–At a time when it is vitally important for the rare disease community to come together, the National Organization for Rare Disorders (NORD®) has announced a program of broad-ranging topics with speakers of unparalleled expertise for the 2020 NORD Rare Diseases and Orphan Products Breakthrough Summit, taking place… Read More

Tags: HHS, Peter L. Saltonstall, FDA, NIH, NORD Summit, Center for Drug Evaluation and Research, Peter Marks, Rare Diseases & Orphan Products Breakthrough Summit, MD, covid-19, US Department of Health and Human Services, Center for Biologics Evaluation and Research, Center for Innovation in Global Health, Patrizia Cavazzoni, Entering a New Era, Congresswoman Robin Kelly

July 23, 2020

TOPIC: Press Releases, Featured News, COVID-19

NORD Awards COVID-19 Rapid Response Seed Grants to Rare Disease Patient Organizations Impacted by the Pandemic

Posted at July 7, 2020 10:02 am by Laura Mullen

Washington, DC, July 23, 2020—In response to the unprecedented challenges rare disease nonprofit organizations are currently facing, the National Organization for Rare Disorders (NORD®) today announced nineteen seed grant recipients of its COVID-19 Rapid Response Leadership Series program. The awards will assist patient advocacy groups to access capacity-buildingRead More

Tags: NORD, Membership Organizations, covid-19, Debbie Drell, Rapid Response Leadership Series, Rapid Response Seed Grant, capacity-building, virtual tools, software platforms

July 16, 2020

TOPIC: Press Releases, Featured News, Patients & Members, RareLaunch

CZI Grants to NORD and EURORDIS Support Organizational Capacity Building and Rare Disease Day Campaigns

Posted at July 7, 2020 12:30 pm by Laura Mullen

Today, the Chan Zuckerberg Initiative (CZI) announced $1.3 million in funding to support the global rare disease community through two distinct grants to NORD and EURORDIS-Rare Diseases Europe. These grants will support organizational capacity building programs and awareness campaigns for Rare Disease Day, respectively, and are part of CZI’s Rare As One Project, aimed at supporting the… Read More

Tags: Rare Disease Day, eurordis, NORD, National Organization for Rare Disorders, covid-19, Chan Zuckerberg Initiative, CZI, Rare As One Project, EURORDIS-Rare Diseases Europe

June 22, 2020

TOPIC: Press Releases, Featured News, Research

NORD’s Jayne Holtzer Rare Disease Research Grants Program Continues Its Commitment to Rare Disease Research with New Funding Opportunities

Posted at June 6, 2020 08:57 am by Valaree DonFrancesco

Washington, DC, June 22, 2020 – The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, today announced the availability of three new funding opportunities to support the study of two rare diseases. The initial application deadline is August 25, 2020.

NORD’s Jayne Holtzer Rare Disease Research Grants Program… Read More

Tags: Vanessa Boulanger, Appendix Cancer and Pseudomyxoma Peritonei, Neuroendocrine Cell Hyperplasia of Infancy, covid-19, NORD’s Jayne Holtzer Rare Disease Research Grants Program

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