Written by Maia Craig on January 12, 2022
NORD’s Rare Cancer Coalition (RCC) worked hard in 2021 to raise awareness for rare cancers and tackle issues that patients and caregivers face, such as access to care, treatments, and research.
At the start of 2021, NORD and our RCC members partnered with 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 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 Maia Craig on December 6, 2021
Mark Laabs is the Founder and Chairman of the Rare Cancer Research Foundation (RCRF). He shares a passion for driving research infrastructure with diversity, equity, and inclusion for rare cancer patients.
What motivated you to start RCRF?
I am a rare cancer survivor, and I was diagnosed with… 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