Recorded live at UConn’s 2026 Rare Disease Symposium, we reveal the grueling work of the rare journey, from battling medical dismissal and insurance denials to the fierce advocacy required.
All tagged nano rare diseases
#378 Why This Week’s NIH Funding Vote Matters for Rare Disease Patients
Policy expert Paul Melmeyer breaks down what the current NIH funding decisions (in late Jan 2026) could mean for research momentum and patients.
#332 Building Stronger Rare Disease Organizations: NORD CEO’s Insight
An in-person conversation at the 2025 Connecticut Rare Disease Forum with The National Organization for Rare Disorder’s President/CEO Pam Gavin sharing how patient advocacy organizations are vital to research and development.
#322 Susannah’s Nano-Rare Journey: 2 Years of Treatment and Triumph
Join Susannah’s father, Luke Rosen, and her physician, Dr. Jennifer Bain, as they share her remarkable progress and hope-filled journey with n-Lorem’s groundbreaking nano-rare treatments.
#274 Wolfram Syndrome with Stephanie Snow Gebel
Episode drop of “It Happened To Me” focusing on the rare disease Wolfram Syndrome.
#219 It Happened To Me Podcast: Genetic Counselors for Rare Diseases
Episode drop of “It Happened To Me” with Kira Dineen sharing how genetic counselors can help people with rare diseases.