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
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
Written by Rohan Narayanan on November 1, 2021
Letter to Governors Stresses Urgency of Expiring Licensure Waivers and its Impact on Patient Access to Care
Washington, DC – November 1, 2021 – Today, more than 230 organizations sent a letter to all 50 state governors urging them to maintain and expand licensure flexibilities enacted at the… Read More
Written by Valaree DonFrancesco on October 27, 2021
Joining me today is Lewis Freese, an incredible young man fresh off the heels of being diagnosed with a rare disease during the pandemic, no less. (I mean, not that there’s ever a good time for this to happen but COME ON!) The condition is called… Read More
Written by Valaree DonFrancesco on October 13, 2021
On the show today, Aprill Lane is a mother of five and rare disease and infertility advocate — and you do not want to mess with her. She and her husband, Brian, tried to have a baby on their own for 4½ years until they were diagnosed with unexplained infertility. Endless… Read More