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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 Valaree DonFrancesco

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

August 25, 2020

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

NORD CEO Affirms Science Should Guide FDA’s Work

Posted at August 8, 2020 06:18 pm by Valaree DonFrancesco
“Since 1906, FDA’s dedicated career employees have worked tirelessly to ensure that Americans have access to the safest supply of products we rely on every day, including food, drugs and medical devices. As a result, the US regulatory system sets the gold standard for the rest of the world. FDA’s credibility is of utmost importance to ensuring patients and… Read More

June 11, 2020

TOPIC: Featured News, Patients & Members, Industry

2020 Rare Diseases & Orphan Products Breakthrough Summit Will Be a Virtual Event, Oct. 8-9

Posted at June 6, 2020 12:09 pm by Valaree DonFrancesco

We are at a pivotal time in rare disease, one that requires new approaches and fresh perspectives in order to achieve real progress. Given the impact of the COVID-19 pandemic on clinical trials, drug development, and pharmaceutical innovation, connecting stakeholders and advancing meaningful dialogue is now more critical than ever to improving the lives of over 25 million Americans… Read More

March 20, 2020

TOPIC: Featured News, Medical, Patients & Members, Industry, COVID-19

COVID-19 Resources for Non-profit Leaders and the Community

Posted at March 3, 2020 09:32 am by Valaree DonFrancesco

The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders (NORD). We know our members are working tirelessly to support their communities during this global crisis. Rare disease organizations have felt the impact of the coronavirus pandemic on all elements of our work including mission-critical… Read More

July 2, 2019

TOPIC: Featured News, Medical, Patients & Members, Advocacy, Industry, Sticky Posts for Homepage, Events, Get Involved

Registration Open for 2020 NORD Rare Summit

Posted at July 7, 2019 09:01 am by Lisa Sencen

The time is now

  • To address affordability for patients,
  • To drive progress with a unified voice,
  • To understand the role of advancing technology in rare disease, and
  • To register for the 2019 NORD Rare Summit!

In 2019, we believe The Time is Now to prioritize action in order to develop stronger resources, build better outcomes and find cures for the millions of Americans living with… Read More