Written by Rohan Narayanan on January 20, 2022
RareLaunch provides critical hands-on learning and support to build capacity for rare disease-focused organizations
January 20, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced enhanced learning and updated courses now available through its innovative RareLaunch® program. Throughout its long history, NORD has been committed to… Read More
Written by Valaree DonFrancesco on December 22, 2021
On the show today, we welcome Dr. Edward Neilan, NORD’s own Chief Medical and Scientific Officer. In this role, Ed oversees medical and research initiatives, including the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) program that NORD established in partnership with… Read More
Written by Rohan Narayanan on December 15, 2021
Seven Rare Disease Advisory Councils Established Since Launch of NORD’s Project RDAC
Washington, DC – December 15, 2021 – In 2015, the first rare disease advisory council was created in North Carolina by patients, caregivers, families, and providers. This year, the National Organization for Rare Disorders (NORD), the leading advocate for… Read More
Written by Valaree DonFrancesco on December 8, 2021
Today’s extra-long, extra-special BONUS episode is brought to you from the 2021 NORD Breakthrough Summit. Every year, NORD hosts its flagship conference in October to discuss what’s new, relevant, and on the horizon in the rare disease space. The session we’re featuring is “Designing Trials for Inclusivity, Equity, and Engagement,”… Read More
Written by Valaree DonFrancesco on November 24, 2021
Chris Brannigan, a major in the British Army, took off his boots for a 1,200-mile barefoot walk down the eastern seaboard of the United States in an effort to raise funds for the creation of a gene therapy treatment that could help patients like his daughter Hasti, battling Cornelia de… Read More
