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Archives for: January 12th, 2022

The 2021 NORD Breakthrough Summit

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

Dianna’s Story as a Rare Survivor

Written by Rohan Narayanan on December 3, 2021

Once, I was an intelligent, well-traveled and active African American entrepreneur in my middle 40’s who had opportunities to do wonderful things in the world. My passion was to help disabled people of all ages improve their lives. I was fortunate enough to be an icon as the first woman in technology to educate thousands of individuals in university and Fortune corporations, as well as offering my expertise in state, federal and international consulting. 

Further aspirations ended when I was diagnosed with stage IV Leiomyosarcoma (LMS) pelvic bone cancer and given 3-6 months to live. I am… Read More