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Archives for: December 22nd, 2021

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

One Father’s Barefoot 1,200 Mile Journey

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

Meet Kam Redlawsk: Disability Advocate

Written by Valaree DonFrancesco on November 10, 2021

On the show today, Kam Redlawsk is a designer, illustrator, writer, and disability advocate. After five years of being consistently misdiagnosed and not taken seriously, she was diagnosed correctly with a condition called GNE Myopathy, which is a very, very rare degenerative muscle wasting disorder. There’s… Read More

Kam Redlawsk: Disability Advocate

Written by Valaree DonFrancesco on November 10, 2021

On the show today, Kam Redlawsk is a designer, illustrator, writer, and disability advocate. After five years of being consistently misdiagnosed and not taken seriously, she was diagnosed correctly with a condition called GNE Myopathy, which is a very, very rare degenerative muscle wasting disorder. There’s… Read More