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Archives for: November 10th, 2021

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

Protecting Patients and Telehealth Access: Over 230 National Organizations Urge Governors Across the Country to Maintain and Expand Licensure Flexibilities Throughout Federal Public Health Emergency

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

The Next Generation of Rare Disease Advocate

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

The Strength of Families

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